The Right Light

My favorite time of day to search for sea glass is early morning. When the sun comes up, but it's still close to the horizon, the long rays of light hit the beach at a low angle, and even the tiniest bits of sea glass glow like jewels.

It's the same sea glass that you might miss if you were passing by in the middle of the day, when the sun is shining straight down on it.

Once again, this reminds me of how we look at the people around us.

My little sister used to wear a cloth bib around her neck, even when she was six or seven years old, because the muscles in her mouth didn't work properly.  So she drooled all the time.

We'd go to the grocery store and people would stare at her, even though my mom and I were always wiping her chin with that cloth. They saw that bib, and her wet chin, and they couldn't get past it.

But I saw her in a different light.

My little sister was adorable.  She loved music, and doing simple craft projects, and drawing (some people might call them scribbles, but they were full of personality!), and she could laugh so hard that tears would roll down her cheeks and she'd collapse on the floor, all out of breath.  She was a joyful kid.

You just had to look at her as a person, instead of a disabled girl who drooled, to see that.

My task for you is to think about your disabled sibling.  If people are looking at them with a negative light, what do you think they see? Okay, now, imagine you could shine your own light on them--the light that sees the good things about your sibling, as well as the negative things.  What positive traits would you light up for someone else to see?  What are the things that you know are special and good about your brother or sister?

Dressed for Easter, long, long ago! See how cute our little sister looks!

Try writing some of those things down in your journal. Or maybe drawing them into a card to give to your sib, for no reason at all--just a card to say: here are the things that I like about you, the things that make you special. Or you could share them with a parent or another sibling. 

Try it! And if this is a tough day to try shining a positive light on your brother or sister, pick someone else to shine that light on right now.  Maybe you could shine it on yourself! But keep your eyes open, and you'll be sure to find some things to write about your disabled sib in the days to come.  All you need is a chance to look at them in just the right light.

Let that light shine on!

Little Gems and Journaling

Little gems--treasured on my windowsill

Sorry it’s been so long without a post—this has been a busy month and a half!

So, as I’ve been working on revising my novel, I’ve started keeping a journal from the perspective of my main character, Cara, who has an older autistic brother.  And that reminded me how important journals have been in my life from childhood on. Even as an adult, I find that they help me sort out my feelings and mixed emotions about things—and they help me remember things that I treasure.

Which gets me to you. 

A heart map like the one we made earlier is one way of representing things that are important to you.  But a journal is another.  You can use your heart map to get started writing a journal, or you can use your journal to add things to your heart map.  Ideas create more ideas!

Today I’m going to encourage you to start writing (and drawing) some of the things that are important to you on a regular basis.  I’m encouraging you to keep a journal, if you don’t have one already.  You can use a notebook with lines, or one with blank pages if you like to draw as well as write--it's completely up to you. And today I’m going to give you a suggestion for something to put into your journal, if you can’t think of anything right away.   Ready?  Stay with me, now.

I took the picture below just the other day, when I was walking on the beach.

That sand dollar is TINY—about the size of a dime.  I almost didn’t see it.  And here’s another picture of something I almost didn’t see:  a crocus on a hill, just off the beaten track.

These little gems are all around us, and people walk right past without ever really seeing them. 

Sometimes I think people are like that, too.  Full of surprises and feelings and experiences that other people don’t notice from day to day.  And it makes me wonder if you ever feel that there are things about you that don’t get recognized because everyone is too busy to notice. 

Maybe no one knows that you really like to sing, or that you are a great artist.  Or maybe no one noticed that your feelings were hurt when your friend forgot to save you a seat at lunch.  Maybe people don’t realize that you are the only one who knows how to help your brother calm down after he's had a tantrum.  Maybe everyone thinks it’s great that your sister loves to be with you, but you really just need a little time to be by yourself each day.  Maybe you dream of being a writer, or an actor, or a marine biologist, and no one suspects it.

What is something unique about you that you think goes unnoticed?  Write about it.  Draw it.  Maybe you want it to stay hidden.  But maybe you hope other people will notice.  This is similar to the last activity we did, but it focuses more on what you want other people to see in you that seems hidden, or even unappreciated.

In families with special needs kids, it’s easy to feel like someone has overlooked something important about you.  It’s like that for everyone at times, but . . . more so with a special sibling. 

So take some time and recognize some of the things that make you unique--that make you special.  And maybe, once you do, you’ll decide to share some of them with your family, or your friends, or an understanding teacher.  Who knows—maybe you’ll notice something about those special people that you’ve never seen before, either!  Hidden gems are everywhere.  Find some today.


 

The Journey: On Our Way

Do you remember how there was a section on my heart map that was marked with a band-aid?  Today we’re going to do a little exploring in the “painful” section of our hearts.  How deeply you explore is up to you—only go in as far as you feel you can today.  Or skip it and come back another day, when you want to.  This is your journey—you choose the path you want to take.

But if you feel ready for a little trip into band-aid land, I’ll start you out with a visit to one of my own Shadowland destinations.  Then we’ll do an activity to explore one of yours.

When I was in second grade (back in the dark ages before whiteboards), we used to do something in Language Arts called “sentence lifting.”  The teacher would look through our papers and pick out sentences that needed to be corrected.  She’d “lift” the sentences from our papers and write them on the blackboard, and then we’d copy them down and make corrections. 

I never minded sentence lifting—my sentences rarely made it to the board.  But one day, a sentence appeared on the board that made me want to crawl under my desk and disappear.  The sentence read:  I feel sorry for Frances because her brother and sister are retarded.

I felt like someone had slugged me in the gut.

My breath squeezed out of my lungs, and my face got all hot.  I stared down at my green lined paper, and everything went out of focus.  I remember the teacher walking by my desk and asking if I was okay.  I got back to work after that, but I felt like everything was moving in slow motion.

 To this day, it’s hard to separate out all of the complex emotions I felt when I saw that sentence staring at me—and at all twenty-five of my classmates—from the front of the room.  I’ll try to sort them out.

1.  Anger—I was furious that anyone would feel sorry for me for anything—let alone for having Bobby and Jeannette in my life.  Now, this was back in the days when kids like Bobby and Jeannette were usually sent away to live in institutions, and there weren’t many disabled kids living at home with their families.  Other people weren’t really used to the idea of having kids like Bobby and Jeannette out in the community, and they thought it was bad for “normal” kids like me to grow up with such a “burden.”  Good thing my parents knew better.  And even though I didn’t know much about institutions when I was in second grade, I knew that I could never imagine living my life without Bobby or Jeannette.  So I was practically shaking with anger at the thought of someone pitying me for living with the siblings I loved so much.

2.  Embarrassment—That sentence glaring at me from the board was like a blaring neon sign that said, “Frances is DIFFERENT from everyone else in this room.  Her brother and sister are DIFFERENT from everyone else’s siblings.”  Now, I was not the kind of kid who wanted to be DIFFERENT.  I was proud of the fact that I was half Japanese—that was a kind of “different” that I didn’t mind at all.  But “different” because other people thought there was something wrong with my family?  Not okay at all.  That was the part of me that wanted to crawl under my desk and disappear.  Because I realized that Bobby and Jeannette really did look DIFFERENT to everyone else in the world, even if they didn’t look so different to me.

3.  Confusion—I knew that whoever wrote the sentence had to be one of my friends.  My brother and sister went to school in another town, where there was a program for other disabled kids—that was the way things were back then.  So most of the kids at my school didn’t know I even had a brother or sister.  Only the friends who had been to my house would have met Bobby and Jeannette—so how could they possibly feel sorry for me when they knew my brother and sister?  I just didn’t get it.  I loved my friends.  I loved my brother and sister.  How could my friends not see Bobby and Jeannette the same way I saw them?

4.  Gratitude—Who would have guessed that in a weird way I was grateful to whichever friend wrote the sentence for caring about me?  I realized that they recognized that things weren’t simple living with two disabled siblings.  So, even though most of my emotions were strongly and fiercely opposed to the idea of being pitied, a tiny portion of my brain realized that someone wrote the sentence because they wished my life were simpler.  Easier.  Less complicated. 

5.  Pain—It hurt to see the label “retarded” written on the board to describe my brother and sister.  It hurt because I knew, even as a seven-year-old, that people would see the label and not see the people behind the label.  I knew that “retarded” meant other people could dismiss them as being something less than a whole person, that they didn’t have to think of Bobby and Jeannette as individuals any more, but could lump them into some vague idea of what “retarded” was.  And since the word “retard” was such a common schoolyard insult, it meant they could lump them in with the lowest of the low.  It meant they were too dumb to matter.  And nothing could be further from the truth.  So it hurt—a lot.

Since it happened over forty years ago, you could certainly say that I lived through that moment and was able to put it behind me.  But the truth is, that moment had a profound influence on me.  It made me realize that not everyone sees my brother and sister (or even me!) the way I do.  I think it may have been a turning point in my life—a moment that made me realize that I wanted other people to see Bobby and Jeannette as important, valuable human beings, and not just as “burdens” or “retards.”  I wanted them to see me as a regular kid with a regular life, not as some kind of saint or a long-suffering, overburdened sibling. 

So, today I’m going to ask you to make a list of the things that you would like other people to know about you when they learn that you have a disabled sibling. The stuff that makes you a real person, and not just someone’s idea of what the sibling of a disabled person must be like. If you want, you could also make a list of things you want them to know about your sibling, too.

At the time of the "Sentence Lifting Incident", my list would have looked something like this:

I love to read, and read and read.

I take piano lessons, and I HATE practicing.

I can be bossy to my brother.

I love toads and frogs, and I like to make terrariums.

I am good at school stuff, but I am not a very fast runner.

I wish my mom would not yell at my brother when he gets upset at the grocery store.

I wish my little sister could walk.

I wish I had white-blond hair like my good friend, Beth.

I want to be a marine biologist like Jacques Cousteau when I grow up.

Sometimes when I get mad, I go into the closet and shut the door and scream.

I hate people who stare at my brother and sister.

I am scared of “The Wickerson Brothers” from the movie “Horton Hears a Who” and I hate the flying monkeys in “The Wizard of Oz.” 

Tyrannosaurus Rex gives me nightmares.

I am shy around strangers, but I am LOUD at home with my family and friends.

I am a regular kid with a regular life.

For my brother at the same time, I would have included things like:

Bobby loves to watch Captain Kangaroo.

He brushes his teeth better than I do.

He is good at shooting baskets.

He loves to ride on his Big Wheel bike.

He shares everything with me.

He likes to laugh at jokes even if he doesn’t understand them.

He cries if he gets scared or if he can’t have something he wants. 

He works hard in school and he has neat handwriting.

He remembers everybody’s birthday in the whole family, and all our friends’ birthdays, too.

He has the TV schedule memorized.

He has a kind heart.

He is a good big brother to me.

You can leave your lists and be finished with today’s activity, or you can explore further.  Are there times when you’ve felt that people judged you or your sibling without really knowing you?  How did that feel?  Have you had complicated or mixed feelings when being confronted with your sibling’s disability?  What were the different feelings that surfaced?  Did any of them surprise you?  What do you want people to see when they look at you and your disabled sibling?  What don’t you want them to see?

Heart Work: Part Two

You’ve mapped out the part of your heart that sits in the sun-warmed lands:  the people you care about, the activities and things you enjoy doing.  (See the last blog post if you have not begun your heart map yet.)  Now it’s time for us to explore the Shadowlands.

What lies in the Shadowlands of your heart?  Stuff that you don’t like to bring into the light. Painful memories or experiences that have stayed with you.  Things that you have done or said that you are not proud of.  Secrets.

You don’t have to put them on your heart map if you don’t want to.  But this is a good time to look at them in private.  It’s good to know where the treacherous terrain lies when you embark upon a journey.

On my heart map, I’ve represented a lot of my Shadowlands with pictures and symbols.  A large tear represents my sad memories, which are mostly connected to loved ones I have lost.  There is a bandaid for hurt feelings, a tall building for my fear of heights, and an ant for a strange phobia I have of dead ants.  I didn’t even want to draw a dead ant on my heart map.  Shudder!  That’s why the ant in my picture is alive and looking up.

There is a padlock near the ant and the tall building.  That’s for the secret memories that are locked in my heart.  Now that I am older, there aren’t as many secret memories in there.  I’ve learned that it helps to share them with someone you love and trust very, very much. 

Some of the things that were locked in my heart were things I thought were unforgivable about myself.  I’ve learned to forgive myself for a lot of them, so I’ll share one of them with you.

It’s the way I got my “dead ant” phobia.

We used to get a lot of ants in our house every summer.  We had some big old black ants that used to march all over the kitchen, and my mom kept a can of RAID! insecticide in the cupboard to spray around the doorframe every night.

One evening, I saw a big ol’ ant crawling around on the kitchen table.  I was mad at that ant for being in our space, and I decided that I’d teach it a lesson.  I grabbed the can of RAID! and sprayed the ant right there in front of me.

Now, I’m getting the creeps just writing about this. I can feel my insides just tightening right up, and I’ve got a yucky feeling in the back of my throat.  Because I remember watching that ant die. 

It was a horrible thing to see, and I realized that I had caused a living creature to feel pain and to stop living and going about its normal business of just being an ant, doing what ants do.  And I’ve felt guilty about that for the rest of my life.

But guilt is like a coin that has a good side and the bad side.  On the bad side, my guilt over torturing that ant has given me a life-long phobia of dead ants.  Something inside me wants to scream and run from the scene every time I see a dead ant—I can’t help it, that’s my gut reaction.  I’ve been fighting the urge to throw my laptop on the floor and shriek and run away from it, just because I keep seeing the words “dead ant” on the screen.  AAAAAAGH!!!  (That feels just a little better now.  Sorry!)

But the guilt I’ve felt about hurting that ant has also done something good.  It’s made me a more compassionate person.  I try hard to respect all living things.  I might go to some extremes, but I don’t mind carrying any insects that come into our house outside again to freedom—even the wasps that seem to find their way in every spring.  I realize that every living thing wants to keep living, and I try my best to help and not harm.  I try to remember that when I deal with people, too.  Everyone has feelings, even if they can’t express them. I try to look at everyone as an individual when I see them, and not just as another face. So, guilt can help you to become a better person.

You may have some feelings of guilt that have something to do with your brother’s or sister’s special needs.  That’s normal.  As a matter of fact, all brothers and sisters have complicated feelings towards each other, whether one is disabled or not.  But sometimes having a sib with a disability makes things seem just a little more complicated at times.

We’ll touch on some of those complicated feelings in other blog posts.  (I may even share some of my complicated feelings about my brother and sister.) But for now, making your map is a chance for you to look at EVERYTHING that’s in your heart—and a lot of that will have nothing to do with anyone else but you.  That’s good! --because you are a whole person, made up of lots of different feelings and experiences, likes and dislikes, which are a combination of what you do with your family, with other people, and by yourself. 

You are you, and your heart is your own.  Everyone has bright sunny places in their heart, and everyone has Shadowlands.  Knowing what’s in your own heart makes it easier to appreciate the wonderful person that you are.   Draw your map, and keep it in a safe place.  You’ll be pulling it out from time to time as you continue on your own special journey. 

In my next post, we’ll talk a little more about the journey.  See you soon!

Heart Work: Part One

As promised in the last blog, our first activity involves making a journey to an unknown place.  Unknown, that is, to everyone except you.  And even you might be surprised by what is hidden in this ever-changing territory--so full of sunshine, so full of shadows. It’s the territory of your own heart.

If you are going to go on a journey, it helps to know the terrain.  Is it mountainous and cold?  Better grab your hiking boots. Tropical and beachy?  Don’t forget your sunscreen.  And your flip-flops, too.  Wherever you're going, you might want to consult a map as you plan your trip.

You don’t have a map, you say?

Then this activity is for you.  It’s time to make a map of your own heart*.  You’ll have to do some traveling around in there to make it, but that’s part of the fun.  It’s time to focus on YOU, so this heart work is important.

How you choose to make this map is up to you.  I’m going to give you some suggestions, some ways you might want to approach making your map—but since it’s your heart, only you will know what’s right for you.

Let’s start by thinking of some of the things we keep in our hearts.  Some of the stuff that really matters—stuff that stays with us because it’s important to us.

Loved ones?  Pets? Special places?  Those are things that exist in our hearts.  Some of them may not even be with us anymore, but they still can be found in the territory of our hearts.  My pet rabbit, Pippin, will always be in my heart, even though he died fifteen years ago. 

What about things we love to do?  Special memories and experiences that we never want to forget? Those are part of the landscape of our hearts, as well.

Get a piece of paper and some colored pens or pencils.  Draw a heart on a piece of paper.  Sure, it can be as realistic as you want it to be (chambers and valves and aortas and veins. . .)—or as simple as you’d like.  (Think “Valentine heart”. ) Start considering how you’d like to represent those things that can be found in your heart on paper.  Will you draw them in?  Write about them?  Use a combination of words and pictures?  You could even use magazine pictures to make a collage. It’s up to you!

Here’s a picture of some of the things that are part of my heart’s landscape.  You’ll see that I’ve chosen to put my loved ones in the very center of my heart, all together.  But you may choose to give each of your loved ones a special portion of your heart, all their own.  Maybe you need to make a special heart for each one of your loved ones.  There’s no rule that says you can’t have separate maps for as many portions of your heart as you’d like!

I’ve included things I love to do, trips I’ll never forget, and a general region for my friends, old and new.  But there is a lot of blank space—be sure to leave some in your heart map, as well.  Those are for some of the darker things that exist in your heart.  We’ll add those in soon—in the next blog post. 

Keep your heart map nearby—it will help guide you through many of the activities we do here.  You may keep adding to it over time, or redraw it—because our heart’s boundaries are always changing. 

I’m even thinking of re-mapping my heart sometime so that I have “warm climates” and “cold climates” to visit.  Some of the things I put in the warm climates may also be found in the cold climates.  My cat, Perry, might go in both places.  I love how he’s such a cuddlebug, and how he’s sure that he’s “people” so he puts his two cents into everything that happens in the family.  But I hate the fact that he keeps destroying things in our house—he knocks small things off shelves and counters on purpose to get our attention, and he rips and chews up our belongings if he likes their texture, so he makes me want to scream!  I’d put “Cuddlebug Perry” in the warm climate of my heart, and “Perry the Destroyer” in the cold climate if I decide to re-map my heart that way.

Or maybe I’ll have beaches, swamps, and deserts.  The swamps would be for all of the things that I have “complicated” feelings about.  (I like swamps, but I prefer to explore them from those trails with the wooden walkways instead of mucking around in them too much.  I’ve lost too many boots that way. . . Some of my memories are complicated like that—they only feel safe if I don't think about them too much, because they are both happy and painful at the same time.  Some people are that way in my heart, too.) The beaches would be for all the stuff that makes me happy.  And the deserts would be for the stuff that's really hard to think about much at all.  Like some of the stuff that I’ll talk about in the next blog.

                                                                                                             

So, get started on your heart map—it’s a one-of-a-kind!  Just like you!  We’ll finish it up with the next blog post.  And then we’ll use it to do some more exploring.  Because if you’ve got a map, you really ought to use it!

 *inspiration for this idea comes from the book Awakening the Heart: Exploring Poetry in Elementary and Middle School by Georgia Heard, copyright 1998, Heinemann Publishing

http://georgiaheard.com

You Come Too--a Wayfarer's Guide

Think of this blog as a travel guide--a handy, friendly resource to help you on a one-of-a-kind journey . . . a journey that you've already begun . . . a journey through life with a sibling who has special needs.  It's a journey full of mountains and valleys and wide, open plains.  Like all journeys, there are parts that are more fun than others, parts that are a little meh, and parts that aren't any fun at all.  Hopefully, this travel guide will highlight lots of fun stuff, while still showing you around some of the more difficult terrains.

Travel guides don't TELL you where to go.  They don't scream, "You MUST visit the world's largest ball of dryer lint! You MUST take that road through the mosquito-infested swamp!"  But they do give suggestions.  You might like some of those suggestions.  You might like all of them. (Hey, some people happen to like traveling through mosquito-infested swamps!) Or you might decide that you're just not that interested in some of the things I present.  But no one's going to force you to do every activity that you read about in these posts.  You really don't have to check out that giant lint ball if you don't want to.


This blog will highlight points of interest that may appeal to you:  good books, websites, and other resources to inform and entertain you.

It will offer activities for you to try.

It will describe some of the places you may want to explore along the way--places that can only be found by looking within yourself, in the hidden territory of your own heart.

We'll look at ways the journey changes us.  Sometimes we really do have to travel through that mosquito-infested swamp, because all the other roads are closed.  This blog will help you find ways to make that road a little less . . . swampy.

The most important things to pack for your journey?  Nope, not bug spray.  (Although that's not a bad idea.) Paper and pencil.  They are some of the most versatile tools you'll ever possess.   For our first excursion, you may want some colored pencils or markers, too.  Keep your eyes open for the next blog post . . . we'll be heading for a place that no one knows better than you.

Hope you're ready to start exploring!