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The Autistic Spectrum |
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When I learned to do sign language and use the computer in 1992,
I was surprised that other people wanted to know how I think. I always wanted to learn how everybody else thinks because there
are so many of you and I wanted to make myself like you so I could fit in your world.
But I learned that people wanted to know about me too, and
when they learned how I thought and why I did things, they did things that weren't as confusing to me and I could understand
them better. I learned that I could stay like me and still fit in your world, a little. So I decided it is better to stay
like me and fit in a little, than become not like me and fit in a lot.
So this booklet is about me and other people who are different.
But I only know how my mind works and how I think, so maybe some of the other people who are different are a lot different,
or maybe some of them are a lot the same, or maybe some of them are a little the same.
People who are different are never different in the same way.
Every one of those people has some gift, like understanding animals or running very fast, or some talent, like drawing or
music or math or creating songs or poems or stories, or some skill, like putting puzzles or models together, or something
about the way they talk or look or move or understand things that makes them special.
People who are different may not understand how to talk to
other people, or how to act the right way at all the right times, or how to understand feelings, or how to sort out all the
sights and sounds and smells in the world, but they are still special because there is just one of them, like there is just
one of you.
So this booklet says some of the things that people like me
might do, and why we might do them. And this booklet says what people like you might be able to do back. So mostly this booklet
is about me and about you.
Plus if you see someone who is different with their parents
or friends, maybe their parents or friends will be doing things with them that you might not understand. Maybe this booklet
will help you understand what they are doing and how it helps the person who is different.
Some people live in two different worlds. Some people who are
different don't understand how to communicate very well with you and the outside world, which could be called the real world.
Some people have a world inside their head too, which is more peaceful and easier to understand than the real world.
The world inside my head is quiet and peaceful and there are
no people inside and nothing hard to figure out. So it is a safe place when the real world gets too confusing.
So your world might be the one that most people know the best,
but their world can mean a lot to them too, when they need it. The world inside my head is not a bad place or a crazy place,
it is just a quiet and peaceful place. Maybe it is like a quiet closet you used to sit in when you needed to be by yourself
when you were little.
So if you see someone and he seems to be in his own little
world and his parents or friends are letting him do that, they're not ignoring him. Maybe they're just letting him be in a
world he likes for a short time.
Some people don't see or hear the same things you do. One reason
the real world can get too confusing is that some people take in information differently than you do. Information means what
comes in your senses, like sights, sounds, smells, tastes, and touches. Sometimes their brain is actually built differently
or there is a short-circuit in the electrical pathways their brain uses to take in information and process it. So their pathways
might not work the same as yours.
When you look at a wave on the beach, a smooth clear picture
of a wave goes into your head. But a person whose brain is different or whose pathways have some bad areas might see a picture
of a wave broken up into pieces or different colors or strange shapes. So maybe he isn't even seeing the same thing you do.
Because seeing isn't just with your eyes, it is also how the
picture that goes in your eyes gets to your brain. You're so used to it going to your brain the right way maybe you don't
think it could go the wrong way. But it does for some people who are different.
Also, when you hear the sound the wave makes, maybe your brain
says it isn't too loud because your brain is comparing it to something really loud, like a firecracker. But a person whose
brain is different or whose pathways have some bad areas might not be able to compare the wave to anything else, so it could
sound very, very loud to him when it is not compared to anything else.
Or the person might have a sound pathway that is not built
the same as yours, there could be very sensitive nerves along that sound pathway, like an amplifier. So a sound that isn't
so loud to you could boom out very loud to that person who is different.
Also, the sight and the sound probably go into your head at
the same time, evenly, and balanced, they're both part of that wave on the beach, you do those both automatically. But a person
whose brain is different or whose pathways have some bad areas sometimes has trouble balancing information that goes into
his head.
Sometimes only one thing can go in at one time. So the sight
could go in first, then fade out because the sound is coming in. When the sight fades only the sound is left, it is the only
information the person is getting, which makes it sound louder because it is all he can focus on.
So you shouldn't always think a person who is different gets
the same balanced information from the world that you do. His eyes and ears can be focused on the same things yours are, but
once that information gets onto the pathways to his brain, it can go off in wrong directions or get changed or faded or scrambled
or confused. So the information might not get to his brain in the same condition the information arrived at your brain.
Lots of times I'm surprised by what other people said they
saw and heard, because it is not what I saw and heard. So what you see and hear might be the right thing, and the person who
is different might be seeing or hearing the wrong thing. Maybe you could remember that he can't help seeing and hearing the
wrong thing, and he doesn't even know he is seeing or hearing the wrong thing.
If you were looking right at something and your brain told
you it was something scary, you probably wouldn't believe someone who told you it was something peaceful and not scary at
all. You might, but you probably wouldn't. So it might be helpful to tell the person who is different that what he is looking
at is really peaceful and not scary, but if he keeps not believing you, you should not try to force him to believe you. Because
it is hard to make someone believe you when he is seeing something completely different than you are.
Some people don't process information the same way you do.
Once information gets to your brain, your brain does things with it. I learned that when you see things, they usually remind
you of other things, this is called association and train of thought.
You could see a red balloon and it might remind you of a birthday
party you had when you were little, or a birthday party you're planning to go to next week. You might start thinking about
birthday parties, then you might start thinking about gifts or eating cake and ice cream.
But people who are different don't make associations or train
of thought very well. When I see a red balloon, I think, That is a balloon, the red color is hurting my eyes a little. That
is all the processing my head does about the balloon, then it stops. So if you started talking to me about birthday parties,
I would be surprised. It would take me a little time to find information about birthday parties in my head so I could understand
what you're saying.
So you might think a person was not smart when really his mind
just doesn't make associations or train of thought like yours does, or makes them a lot more slowly.
Maybe it would be helpful if you said, That balloon reminds
me of a birthday party I had when I was little, I'll tell you about that party. Then the person might not be so confused why
you suddenly started talking about birthday parties.
Some people don't focus on the same things you do. At a carnival,
you might see balloons, pennants, rides, games, cotton candy trucks, and ticket booths, and your attention might jump from
one thing to another, quickly.
But a person who is different might see the circular shape
of the ticket booth window and their attention gets focused on that, then everything else tunes out. I don't know why my head
picks things to focus on, but I know it is usually not the same things other people pick to focus on. My head gets very interested
in ticking clocks or little spiders or the reflection of the sun on water.
So if you see someone who is different looking in a direction,
you might see a big car and you might say, Do you like the big car? Because you might see many things but that is the one
that stands out to you. But he might be surprised by your question because actually he didn't see the car because his attention
had been caught by the sun reflecting on hubcaps. Because that is what stood out to him.
Or if you see someone tilting his head like he is listening
to something, you might say, Can you hear the band playing? Because you might hear many sounds but that is the one that stands
out to you. But he might be surprised by your question because actually he didn't hear the band because his attention had
been caught by the squeak of someone's shoes. Because that is what stood out to him.
So you shouldn't think that what stands out to you stands out
to someone who is different.
Some people don't know how to pick between all the sights and
sounds and smells and tastes and touches. You might not realize how fast the real world moves, people move around quickly
and change the expressions on their face quickly and wave their hands around and change their tone of voice and point to things
all the time.
In a schoolroom, it is busy and distracting. The kids talk
at the same time and push and yell and make strange faces and throw things. The lights are very bright, and the chalk squeaks
on the chalkboard, and the desks creak when you open them, and the mimeograph machine makes the paper smell bad. The teacher
waves her hands around and rolls maps up and down on the wall.
This is all information that needs to be processed. There is
so much information that it is hard to know which is the most important. If my attention tries to focus on all of it, my head
gets overloaded with sights and sounds and smells and tastes and touches, I can't process information that fast, it gets backed
up.
So I pick what I think is important, but usually it turns out
to be different than what you think is important.
I think some people who are different don't really understand
what Important means. So maybe it would be helpful if you told them exactly what you were looking at or listening to so they
can focus on the same thing you're focusing on.
Some people have tunnel vision, so it might be hard to get
their attention from one thing to another. Once I have picked something to focus on, everything else fades out. Then people
might have to say my name many times before I hear them. What goes through my head is, I'm looking at something and I can
see it very clearly, but everything around it is just gray and fuzzy.
Then I think I hear something and I look around and sometimes
I see a person shape or hear a person's voice, but it is the same way I see a light bulb shining in a lamp or a clock ticking.
Because voices and shapes and a ticking clock and light all seem the same in importance.
So some people might hear your voice, but their head is maybe
not processing your words, they might not be seeing you as a real person unless you do something unusual that requires processing.
Maybe you could make your voice higher or lower, or say something
interesting or unexpected, or change your position. Then my head usually tells me to look again, and the gray fuzzy areas
separate into clear individual shapes and I might realize that one of those shapes is a real person, and you're talking to
me.
Some people have trouble processing what they see. Some people
who are different don't understand how something can be different from the way it looks. If their eyes see a hologram coming
out of a picture, their head says that their hand can touch it. Then when their hand can't touch it, their head might have
trouble accepting that. When I saw a hologram, I thought the hologram hid whenever I moved my hand toward it, so I kept trying
to sneak up on it.
Magic shows are hard too, how ladies can look like they're
cut in half, or people inside boxes can disappear, or rabbits can appear inside a hat.
Maybe it would be helpful if you explained to people who are
different that their eyes aren't wrong, that you see exactly what they are seeing.
In some people, the nerves that go from their eyes to their
brain might be very sensitive, so some sights could come along these nerves too strongly.
Sometimes bright sun or certain colors hurt their eyes, like
red or yellow if it is a big bright red or yellow on a lot of space, like on a Volkswagen. They might not like fluorescent
lights or flashing lights like strobes. With all these things, they might blink a lot or put their hands over their eyes.
When a sight pathway is very sensitive, little tiny things
can take up big spaces in your head, so someone who is different could look at the same speck of dust for hours. They might
like reflections that make lights and colors look interesting or unusual, especially in water.
They might like wheels and other things that spin around. They
might be great at doing puzzles or they might be able to take in so much information so easily through their eyes that they
can memorize phone book pages and be great readers.
When you see someone doing these things, he might have a sensitive
light pathway. It might be helpful if you didn't turn on bright lights or flashing lights, or give him a bunch of bright balloons
as a gift. If you were trying to get his attention away from something that was overloading him, maybe you could try to spin
a wheel on a toy truck, or a quarter on a table. If he lost his sunglasses, maybe you could let him wear yours.
Or it could be the opposite, in some people the nerves that
go from their eyes to their brain might be too insensitive, so some sights could come along these nerves too weakly. So they
have to try very hard to get information from these weak sights. They might even stare at the sun because they don't think
it is too bright, but this is dangerous, of course.
When a sight pathway is not very sensitive, people and objects
might be mostly outlines with fuzzy edges. They might have trouble figuring out where objects actually are, so they might
walk around something and run their hand around the edges so they can understand exactly where it is.
They might pick things up and hold it near their eyes or move
it into many positions or tilt their head at it to see if it still looks the same.
Maybe they can't figure out heights, so they might be uncertain
about walking down stairs or going in tunnels. They might be afraid of fast things because everything gets so blurry. They
might be afraid to pour milk into a glass because they can't see the edges of the glass very well.
When you see someone doing these things, he might have an insensitive
light pathway. It might be helpful if you made the lights brighter for him. But don't let him stare just at the lights, instead
maybe you could show him how to look at the objects that are made brighter by the lights. Maybe you could even let him use
a magnifying glass.
If he doesn't want to go near something, maybe you could show
him how to run his hand around the edges so he could find out more about it.
Some people have sight pathways that are bad in both those
ways, sometimes too sensitive, sometimes too insensitive.
Some people have trouble processing what they hear. In some
people who are different, the nerves that go from their ears to their brain might be very sensitive, so some sounds could
come along these nerves too strongly. High sounds like sirens and whistles hurt my ears, and sudden sounds like a car horn,
and loud sounds like shouting, and booming sounds like waves on the beach, and roaring sounds like a vacuum cleaner or lawn
mower.
When a sound pathway is very sensitive, crowds and traffic
can be scary. It can be hard to sleep because of all the little sounds, like wind blowing outside or crickets chirping. Going
to the barbershop is hard because the scissors make loud snips, especially around your ears. People walking on tile floors
are loud. Sometimes a dog barking or a cat purring can be too loud. They might put their hands over their ears or keep shaking
their head.
When you see someone doing these things, he might have a sensitive
sound pathway. It might be helpful if you didn't make loud sounds or sudden sounds, and if a loud sound is going to happen,
you could warn him that it is going to happen. Maybe you could make a soft sound to replace the loud sound, like letting him
listen to a ticking watch.
Sometimes they can tune out the sounds in their head, but that
can make everything else tune out too, like your voice. But sometimes they need to do that if they can't get away from the
loud sounds.
Or it could be the opposite, in some people the nerves that
go from their ears to their brain might be too insensitive, so some sounds could come along these nerves too weakly. So they
have to try very hard to get information from these weak sounds.
They might lean their ear against the refrigerator to hear
the motor vibrating. They might stay in bathrooms a lot because all the sounds echo against the tile and sink and tub. They
might like sirens and whistles, squeaky toys, jingling bells, rattling garbage trucks, blasting TVs and stereos, roaring snowblowers,
and crashing waves on the beach. They might tear paper or slam doors over and over to hear the sound.
When you see someone doing these things, he might have an insensitive
sound pathway. It might be helpful if you keep him busy with lots of sights and sounds so he can't try to listen to just one
sound. Cats who purr can be good. Maybe you could show him where all the different sounds are coming from so he doesn't just
pay attention to the sounds, but to the people and objects that make the sounds.
Some people might spend too much time listening to their own
heartbeat and breathing. They might spin around or hang upside down to make the blood roar in their ears. They might hum a
lot too.
When you see someone doing these things, you might see his
parents or friends trying to distract him into doing other things.
Some people have trouble processing smell or taste. In some
people, the nerves that go from their nose and mouth to their brain might be very sensitive, so smells and tastes could come
along these nerves too strongly. Chalk hurts my nose, and soap and perfume and aftershave and toothpaste.
Almost all types of food smell too sharp. And I don't like
the texture of some foods, especially foods that are hard to chew, like steak. I don't like food that is slimy like shrimp,
or the fat part of chicken, or food that wiggles, like jello. I don't like smooth food with lumps in it, like lumpy mashed
potatoes or crunchy peanut butter. All those foods feel bad on my mouth and tongue and teeth.
So when someone has a sensitive smell or taste pathway, maybe
he is not backing away from you because he doesn't like you. Maybe you have a smell he can't tolerate, even if you're very
clean. It is not your fault and it is not his fault. It might be helpful if you made a lot of fresh air for him, like bringing
him outside or opening doors or windows.
Or if he doesn't like some food you cooked for him, it might
be very good food, but the smell or taste might not go right in his nose or mouth or along the pathways to his brain. Maybe
you could get him some water to drink, and some plain crackers.
Some people have trouble processing touch. In some people,
the nerves that go from their skin to their brain might be very sensitive, so touches could come along these nerves too strongly.
Sometimes touching actually hurts their skin.
I don't like being touched by people when I wasn't paying attention
to them because all of a sudden these shapes are touching me and sometimes I don't know what they are for a second until they
focus in as people. Also, when people touch me, I focus on the touching and I can't focus very well on thinking.
When you see someone doing these things, he might have a sensitive
touch pathway. It might be helpful if you don't touch him at all, or maybe touch him gently. He is probably not backing away
from you because he doesn't like you, instead maybe he is just afraid you're going to touch him. Maybe you could keep your
arms down straight so he knows you're not going to do that.
Don't give him something rough to hold, instead give him something
soft and furry. Don't judge the temperature by what you think it is. If he is shivering, give him another sweater to wear
even if you think it is warm. If he takes off most of his clothes, that will look very strange, but maybe he was just too
hot or his clothes were too tight or scratchy and they started hurting his skin.
Or it could be the opposite, in some people the nerves that
go from their skin to their brain might be too insensitive, so touches could come along these nerves too weakly. So they have
to try very hard to get information from these weak touches. Their parents and friends might hug them a lot and rub their
arm and wrestle with them. So if you see someone who is a little rough, maybe he even hits himself on his head or body, maybe
he has an insensitive touch pathway.
Some people wave their hands around or rock back and forth
or do other strange things. When people have trouble processing information, which is sights, sounds, smells, tastes, and
touches, they might be getting too much information at one time, then their brain and their nervous system can feel so overloaded
they could just run and run.
So instead sometimes they do one simple thing over and over
to calm down their nervous system and take control of it. These things might be waving their hands around or rocking back
and forth or making strange sounds or hitting their head with their hand.
If I'm looking at something and listening to something at the
same time, too much information might come in my eyes and ears at one time, so I might touch something. That gets information
going in a different sense, through my touch, and it lets my eyes and ears have a rest.
Or if someone has trouble processing information, there might
be times when they are not getting enough information. Then their brain can feel empty and stop processing and their nervous
system can slow down and they don't really see anything or hear anything or have any thoughts. They're just there. Then they
might get the information going again in their brain and nervous system by waving their hands around or rocking back and forth
or making strange sounds or hitting their head with their hand.
So if you see someone doing these things, these strange things
can calm down their overloaded nervous system or get their empty nervous system going again. So it would be helpful if you
didn't stare or think they were crazy. Because maybe they are just trying to deal with a nervous system that is different
than yours.
Some people who are different are not as smart as you are,
some are just as smart, and some are smarter. Some people have minds that learn much slower than you do. No matter how much
you want them to learn faster, they can't, so getting mad at them or getting frustrated at them won't help. They can't help
the way their mind is made. People learn by information going through the pathways in their brain, and if those pathways aren't
working right in some places, the information won't go fast. Even a Porsche can't go fast on a blocked road.
Other people who are different might not do well on IQ tests,
but maybe they just don't understand the real world well enough, or communicate well enough, or they have a different way
of thinking that those tests can't recognize.
So some tests can tell you how well a person can communicate
his smartness, but not how smart a person really is inside, or how smart he could be if he could experience the world the
same smooth clear way you do. How much you like a person shouldn't depend on how smart he is or how well he does on tests.
Some people who are different don't interact with other people
in the right ways. Some people don't understand when it is the right time and place to talk to other people. They might seem
too friendly, they might shake your hand and hug you even at times that aren't really right. Or they might tell you stories
and jokes at times that aren't really right.
Figuring out right times and wrong times, and right places
and wrong places, can be hard because there are not always clear rules. There are many things to look at, like whether it
is night or day, indoors or outdoors, whether there are a lot of other people around and who those people are, whether their
expressions and their voices are happy or sad or friendly or angry, whether it is a familiar place or a not familiar place,
or whether there is something else going on, like a carnival or movie.
If a person who is different is paying close attention and
focusing on all the right things, he can put those things on a balance in his head until the answer comes down to You Can
Shake This Person's Hand And Be Friendly, or You Should Not Shake This Person's Hand And Be Friendly Now.
But some people who are different don't focus on the same things
you do. At a movie theater, they might see something shining on a person's shirt, like a bright button, and that information
might go in their eyes so strongly they don't hear the movie coming in their ears any more, even though the movie seems a
lot more important to you than a bright button. Then they might talk about that bright button, loudly, because they're forgetting
about the movie.
You might be able to process the movie and the button at the
same time and quickly decide that the movie is a lot more important. But some people can't do that very well. So if someone
at a movie is talking loudly about something that seems strange to you, he might be a person who processes things differently
than you do. He might not hear the movie or see the people all around him, because something else is going into his head.
So it might be helpful if you told the person the most important
thing to focus on, kindly. You could say, You're right about the button, but this is a movie, so you have to watch the pictures
on the screen and listen to the voices from the speakers.
Or if he tries to hug strangers in a bad neighborhood, you
could say, You're right to like people, but this is a bad neighborhood, see the writing all over the buildings and litter
all over the ground and wrecked cars? So you shouldn't talk to strangers here.
Or the person might not do wrong things at the wrong times
or wrong places, but he might not do right things at the right times or places either. Maybe he just stands there. This could
be because he learned some things to do at certain times and places, but he doesn't really understand why he is doing them.
So if anything changes from the situation he learned, he doesn't know what to do, because he didn't learn this new change.
So he just stands there, because he is confused or uncertain.
Almost everything I do is because I learned it. I don't really
understand why people do things, why they laugh or get mad or wave their hands around or change their tone of voice, or how
they know when to do those things, or what I should do back, unless I learned that exact situation.
So it might be helpful if you tell people who are different
what they should do, if they're just standing there doing nothing, especially if there is a new thing in this situation. You
could also tell them how you knew what to do in this new situation, what new signs you saw or heard that told you what to
do. Then maybe next time he could watch for those things, at least in that exact same situation. If one little thing changes,
he might get stuck again.
Maybe you learned what to do in different situations because
you always watched people, especially other kids, when you were little. You watched them so much that you could tell from
their expressions and body language if you were doing the right things or the wrong things. Maybe you paid attention to people
because your head told you that people are important, that they're very different from furniture or trees.
But many times I don't even notice that other people are around,
because most of the things I see and hear seem the same in importance. When I'm not concentrating on people, they just look
like shapes, like furniture and trees are shapes. So it is hard to copy people or tell from their reactions whether I'm doing
right things or wrong things when my head doesn't see them or hear them any differently than any other sight or sound.
If a person is having trouble focusing on people, it might
be helpful if you were a friendly person who talked and laughed and pointed at things. You might think doing all those things
would be confusing and put too much information in his head at one time and maybe overload his head. You would be right, that
might happen.
But if you're a quiet person who doesn't say many things or
doesn't show many feelings or many expressions or tones of voice, you wouldn't be confusing, but you also wouldn't be interesting.
Interesting means someone or something that needs to be paid attention to and processed.
If you're too quiet, you might not give enough information
to a person who is different and you could fade out to him. So it might be helpful if you could be interesting first, to get
his attention, then when he is paying attention to you, you could quiet down and become easier to understand while you're
explaining something to him or listening to him.
Some people don't understand feelings very well. Sometimes
people who are different don't seem to care about the feelings of other people, they might say things or do things that seem
not polite. One reason might be because the person doesn't see you as a separate person, his head is concentrating on something
else, like a toy he wants, and the only information going into his head is about the toy, not about you at all. He isn't ignoring
you on purpose, his head just isn't processing you. Some people who are different will push right by people like they're moving
a bush out of the way. Just because you're a person and are really there, doesn't mean a person with processing problems knows
you're a person and are really there.
But if he does know you're there, he might still seem not polite
sometimes, because he might not understand your feelings or his own feelings. People who are different do have feelings. Just
like you, something can happen in their head and body when they're happy, sad, angry, scared, or excited, but they might not
be able to connect what is happening in their head or body to the right feeling word.
If you're a mother or a father and you have a little child,
maybe he learned things by watching you and other kids, and copying you and those other kids. So when he does something or
expresses something, you recognize it because you were a little child too, a long time ago, and you know what the right feeling
word is for what he is expressing or for the behavior he is doing.
But some kids don't notice other people or pay much attention
to them, so they might not copy people very well, any more than they copy furniture or trees. So they might not express things
in ways their parents can recognize.
So when a little child who is different throws a new toy down
hard, his parents might say, Why are you feeling angry? But actually the little child had been happy and excited about the
toy, but he didn't express it in the right way. But now he might think his happy and excited feeling is called Angry, and
he might think that when people throw things, they're having the same good feelings he had about the new toy. That would not
be right.
Or sometimes their body doesn't react much to their thoughts
and feelings, maybe the areas in their brain that make their body react to thoughts and feelings don't work as well as those
areas do in your brain. Or maybe the reactions fade out while they're going along the pathways from their brain to their body.
So they might not express much with their body, so their parents
might never think they're feeling anything, so they might never learn any feeling words at all. But just because a thought
or feeling doesn't come out the right way or can't come out at all doesn't mean it is not there.
Some people also might not recognize your behaviors as being
connected to feelings. If you put a certain look on your face and hold your body a certain way, you might expect everyone
to recognize that you're angry or happy or sad, but some people who are different might not recognize that. I learned that
certain expressions and body language match up with certain feelings, but it is still hard for me to recognize them.
It is easier with animals, their expressions and body language
are simpler and more the same. Once I learn the expressions and body language of cats, most cats seem consistent in using
those same ones to mean about the same things.
But the expressions and body language of people look different
from person to person, and you make more complicated combinations with them, and you connect them to other things called moods.
I can't seem to put together what I see on all the parts of your face and body very well. And if you're in something called
a mood, those expressions and body language can mean something completely different than when you're not in a mood.
You seem to recognize those combinations and moods of other
people so quickly and easily that maybe it is something built into your brain that is not built into the brain of some people
who are different.
So it might be helpful if you didn't expect people to automatically
know what you're feeling from your expression or body language. Instead you could explain what you're feeling, how your body
feels when you have that feeling, how other people can tell you're feeling that way, like what signs and clues they see on
your face and body, and what happened to make you feel that way.
Because one time, tears in your eyes might mean you're sad,
but other times, it might mean you're relieved or happy, like in a movie where a nice pet gets home safely to his owner. Or
it might mean you're missing good times you had a long time ago, or you're angry or embarrassed because someone yelled at
you, or you're frustrated because you can't do something.
Do you see how many things tears could mean? This is not easy
to learn or remember.
So if someone is having trouble understanding feelings, maybe
you could tell him, The word feelings is used in many different ways. Sometimes it means physical reactions, like something
sharp poking you, or hot water burning your hand, or feeling sick in your stomach from eating too many cookies.
Sometimes it means emotions, which happen when something you
see or hear or think about becomes important to you, instead of just being something you see or hear or think about. When
you have an opinion that something you see or hear or think about is good or bad, and you want to do something about it, like
stop it or keep it going, that is an emotion, not just a thought. Maybe that would be a good way to explain feelings to someone
who is different.
When you're trying to explain feelings, maybe you could try
not to use other Feeling words. On Star Trek The Next Generation, Geordi was trying to explain about being angry to Data,
who doesn't understand feelings, too. But Geordi kept using other feeling words to explain what being angry was like. This
might not be very helpful.
Instead, you could tell them that when something happens that
you didn't expect to happen, that is called Surprised. You can like the surprise, like a birthday gift, or not like the surprise,
like when someone cooks chicken when you wanted spaghetti.
When your mind has many thoughts all jumbled together, especially
about something new and interesting, and you want to express those thoughts, that is Excited.
When you like what you're doing and you want to keep doing
it, that could be Happy.
When you don't like something and your heart is beating fast
and you want to get away and your stomach is spinning around, that could be Scared. Unless you ate too many cookies, then
it might just be sick.
Some people can't put themselves in your place. Sometimes you
can guess what someone else will say or do by playing a movie in your head. You can actually make a moving picture in your
head that puts yourself in the other person's position, then you guess what you would say or do in that situation. That is
really interesting that you can do that, it must be very helpful, but some people who are different can't do that at all.
If a man is waiting at a ticket booth and the ticket booth
runs out of the tickets just before they get to that man, and he gets mad, you're probably not surprised. You know what you
would feel like if that were you, so you have some idea what he feels like. But I would be surprised, because I can't imagine
myself in his position.
Even if that had happened to me one time, I never think that
is the same as it happening to someone else. My head just doesn't make that connection at the time.
One way I learned you teach little children to be nice to other
children is to say, How would you like it if he did that to you? Then the little child thinks, I wouldn't like it, so I shouldn't
do it to him. But some people can't put themselves in anyone else's position, they just don't have any way to do that in their
head, or maybe that area of their head is very weak.
That is why a person who is different might do things that
seem not polite to you. Maybe you could remember that he doesn't mean to be not polite. If he does something wrong, like cutting
in line, maybe you could tell him that what he did is not allowed, it is against the rules. Because if you tell him that cutting
in line makes everyone else feel sad or mad, and how would he like it if people cut in front of him, he might not understand
what you mean. He might agree with you that he wouldn't like it if someone did that to him, but he might never understand
that other people feel the same way as he would.
That happens to me all the time and I still haven't figured
it out. Just because my head knows how something feels to me, or what I would do in a situation, doesn't mean my head knows
how it feels to someone else, or what they would do.
That connection never happens in my head automatically, someone
else always has to tell me. I don't do it on purpose, my head just doesn't jump from what I am doing to what someone else
would do, or from what someone else is doing to what I would do.
In fact I learned that many times a situation feels very different
to someone else than it does to me, and that someone else would do something completely different than what I would do in
that situation.
I would return money if I found it on the ground, but I learned
many people would not. So I've never figured out how people can put themselves in someone else's place if there are some situations
where people would all do such different things. I would not know when it is a time for doing what other people would do,
and when it is a time where everyone would have a different reaction.
So mostly I just try to let each person be himself, and I treat
each person as very different from any other person, I try to watch carefully what each person does and what he says and how
he feels about things, and I try to understand that one person. It is easier than trying to learn about people in groups,
because I learned each one is so different.
So it might be helpful if you didn't expect someone who was
different to know what you are interested in, or what you're feeling, or what you want to do. Because he probably can't understand
you based on his understanding of himself, or his understanding of anyone else. He needs to learn all about you first, before
he can understand you.
Instead you should just tell him what you are interested in,
what you're feeling, and what you want to do. Maybe you could also tell him what your expressions and tones of voice mean
and what he should do when he sees those expressions and hears those tones of voice from you.
That is another reason why people who are different seem to
do best with people who are very friendly and talk a lot. Because those people explain and express everything they think and
feel, which is helpful to people who are different.
It might be a mistake if you try to figure out someone who
is different, based on your understanding of yourself or other people who are not different. Because he might not see or hear
or think or process information the same way you do. So you shouldn't think you know what someone who is different is seeing,
hearing, thinking, or feeling, if you're basing your guesses on what You would be seeing, hearing, thinking, or feeling.
You shouldn't even compare one person who is different to another
person who is different. Instead you have to learn about that one person. Maybe you could ask him what he is interested in
or what he wants to do, instead of assuming that you know. If he doesn't know or can't say, then you could guess, but it should
be based on what he has been interested in or wanted to do before, not in what you would be interested in or would want to
do if you were in his place. Because remember, you can't really be in his place.
Some people might get confused when things change or when things
go wrong. Some people who are different like routines. They like to know what is going to happen next, and they like it to
be the same thing that happened last time. When information, which is sights, sounds, tastes, smells, and touches, goes into
their head, if it is information they're used to because they've had this information before, it can go into their head on
the same pathways to the same places and get processed the same way as before.
So if someone learns that a picture hanging on a wall usually
hangs straight, if they see a picture hanging straight, that information is easy to process because it is the same as before.
It goes along the same pathways to the same places, maybe those places are checkpoints that decide what the information means.
Like it is flat, it is colorful, it is scenery, it is hanging straight on the wall. So it gets to the same result. It is a
picture.
But if a picture is hanging crookedly, it might start being
processed along the same pathways to the same checkpoints, but then it might suddenly stop at some checkpoint because something
is not the same as before so some checkpoint made a different decision about the information.
Then the information might go off that pathway along different
pathways, and whenever different pathways have to be used they could turn out to be bad ones, which means the information
could just stop completely or get backed up or go off on wrong pathways. So it might never get to the same result, that it
is a picture, or it might finally get there, except that it took longer and was a lot more work.
You seem to learn general things, like shirts hang in a closet,
then you can process little changes about those things easily and quickly, like the shirts are still shirts hanging in a closet
no matter what order they're in, or if one has fallen off its hanger a little, or if pants have accidentally got mixed into
the shirts.
But some people who are different learn specific things, like
when they learn about shirts hanging in a closet, they learn those exact shirts in that exact order. Anything different that
they see next time is not what they learned.
Maybe it is like kids who learn to read by memorizing the shapes
of letters, instead of by phonics. They can read Sat because they learned s and a and t equal Sat. But they can't read Cat,
because the c changes everything.
So if you see a person at an amusement park, like Disneyland,
and he is doing something that looks strange to you, like rocking back and forth or hitting his head with his hand, maybe
a ride was closed when he didn't expect it to be. Some persons who are not different get mad when that happens, this is called
a tantrum.
But some people who are different might not be mad, maybe they're
just having a hard time processing the new information that the ride is closed. Maybe the new information isn't going in the
right pathway or maybe the pathway isn't working right so the information isn't going in at all, it is getting backed up and
overloading the person's head. Then doing one simple thing over and over, like rocking, can calm down an overloaded head and
get the information processing more smoothly again.
If something goes wrong, or something is different from what
they expected, some people can't do something new until the wrong thing is cleared up. If you could fix the wrong thing, that
would be the best, like if the ride at Disneyland could open again.
But if you can't fix the wrong thing, maybe you could explain
why it needs to stay wrong or why it is actually better that it is wrong. You could tell them the ride needs to be closed
for repairs, because if it didn't work well, it would be a dangerous ride, and that would not be good for little children,
so sometimes they need to close it for repairs. Or you could tell them that it is actually good the ride is closed because
now you have extra time to go on another ride twice.
Some people talk in unusual ways. Some people who are different
talk a lot, they say funny things or sometimes strange things, at the wrong times or the wrong places. This is because they
don't know which things you think are right to say and which things you think are wrong. They don't know which times you think
are the right times to say things, and which times you think are the wrong times. They don't know which places you think are
the right places to say them in, and which places are the wrong places.
Those kinds of Right and Wrong depend on many things that might
be easy for you to put together and remember, but that are hard for some people who are different. Their ideas of what are
the right things, the right times, and the right places might not be the same as yours. So they're not trying to be rude or
strange, they're just doing the best they can to pick the things they think are right and say them at the times and places
they think are right.
So it might be helpful if you could smile and say something
kind, maybe you could say, Yes, that is a funny story, and you told it very well, did you know that funny stories usually
aren't told in church, because this is a time and place to be more quiet, but I would like to hear another funny story right
after church in the lobby, which would be the best time and place.
Some people might not say their own words, instead they might
repeat what you say. If you say, How are you? they might say, How are you? If you meet someone who does this, maybe you could
answer your own question with a cheerful voice and say, I'm fine, this is a beautiful day. Because keeping someone's attention
is a good start.
Some people might say, "I'm fine" when you ask them what their
name is. Or if you ask them, What TV shows do you like? they might say, Birds like to fly. That might sound strange, but it
is an interesting thought in their head so maybe you could talk about that thought. You could say, They do like to fly, eagles
and hummingbirds are some types of birds who like to fly.
Because keeping their attention on interesting thoughts is
more important than making them answer a question that isn't processing in their head. Maybe you could find a bird show on
TV, then ask them what other TV shows they like. That might connect birds with TV in their head, which is the question you
wanted them to answer.
Some people have flat voices, their voice might not go up or
down very well. Or they might not talk at all or they might use sign language. Talking isn't the most important thing, communicating
is more important. I don't say many words because they get all jumbled up and stuck between the thinking part of my head and
the speaking part of my head. Maybe that pathway is bad. But the pathway is okay between my thinking area and my hands, so
I can do sign language and type on the computer.
Also when I'm trying to find the right words to say, many people
are already talking about other things. I have a lot of information in my head but it is all organized in places and I have
to find it before I can say things or answer questions. Most people talk too fast and jump around subjects too fast to keep
up.
Also I get distracted because most people don't stand quietly,
they move around and wave their hands and change their expressions a lot. That is interesting and it makes my head pay attention
to you, which is good, but sometimes it makes my head stop trying to think of words.
So it might be helpful if you didn't do too many distracting
things when someone who is different is talking to you, or when you're talking to them. It is good to be an interesting person
in between those times, that might keep their attention, but during the talking times, it might be distracting. Maybe you
could just stand quietly when you talk and listen, then you could become interesting again so they'll keep paying attention
to you.
Some people don't use their eyes the same way you do. Some
people who are different might stare at you, and others might not look at your face at all. But just because they're not looking
at your face doesn't mean they're not listening to you. Sometimes they're concentrating so hard on what you're saying, they
don't want any information coming in their eyes to distract them. So they might look at the floor or off to the side. If they
make some reaction to what you're saying, even just a little reaction, probably they are paying attention. If you're not sure,
you could just say their name or you could ask, Can you hear me okay?
Some people tilt their head to the side when they look at things.
Sometimes the information they're learning from the front is getting to be too much or too strong. If they turn their head
to the side, the information becomes different, because now they're looking at it from a different direction. So the information
coming in from the front stops, which could give their head a chance to catch up.
Or it might be the opposite, the information is not strong
enough from the front, maybe because it is coming along a pathway that is not working very well. If they turn their head to
the side, the information becomes different and maybe goes in on a different pathway that is working.
Also they might want to see what something looks like from
different directions, if it stays the same object when they turn their head sideways. You might know that it does, but the
person who is different might not know that. So he has to learn it by himself.
Some people are awkward when they walk or run or jump or play
games. Some people who are different can do these things very well, but others might do them stiffly. But that doesn't mean
you shouldn't ask them to try activities like sports, because usually they don't even know they're awkward because they don't
compare themselves to other people anyway. Sometimes it is people who are Not different who do more comparing.
You might be surprised that many people who are different will
not try to beat you at games. Instead they might just do the game because they like the thoughts that game puts in their head,
or how that game makes their body feel. Or they might be trying to accomplish the goal of that game, which might be winning.
But trying to accomplish the goal of winning is not the same as trying to beat you.
Some people who are different don't understand winning and
losing, they might be surprised when you get excited about winning or losing. They just play one game, then they move on to
another game. All I think is that I either do the goal or not, it is just a fact whichever way it turns out, like sometimes
it is sunny and sometimes it is cloudy.
So if you play games with someone who is different, you don't
have to let them win just because you think they'll like that. Maybe you could ask them what they're trying to do in this
game, then maybe you could help them accomplish that goal instead of thinking they must want to beat you. Because beating
you might not be in their mind at all, so it might be good if you didn't put that in their mind, because sometimes people
who are not different seem to pay too much attention to beating other people.
Some people have different imaginations than you do. Some people
who are different have very good imaginations, they make up stories and jokes, and they like to play Pretend and Wish games.
Other people don't do this at all, they don't understand things that are not real, like trolls or talking rabbits on Bug Bunny,
or how a toy horse could pretend to do real horse things.
When I put my hand on a toy horse, my hand doesn't do anything,
I think because my head doesn't know what to make the toy horse do, like if it should move fast or slow or in which direction
or how far. But mostly my head doesn't know why I would want to do this with a toy horse.
Maybe you could notice if someone is understanding you when
you talk about make-believe things. If they're not, it might be helpful if you explained to the person who is different that
they're just make-believe.
Some people will take everything you say just the way it sounds.
This is called literal thinking, which means they believe the exact words you say. They might have a hard time understanding
things like What If, or expressions like, It is raining cats and dogs. It might be helpful if you picked clear words that
mean exactly what they say, direct words, instead of phrases that just suggest something.
Of course if the person understands those phrases and likes
learning about them, you should use them, and teach him more about them. Maybe he thinks they're funny.
Some people have a different sense of humor than you do. Some
people who are different will laugh at things you don't think are funny, but they won't laugh at things you do think are funny.
If everyone else laughs, they might laugh too, but they might not really know why they're laughing.
Maybe humor is so hard to understand because humor is usually
when something doesn't fit, when you expect something to mean one thing when it is actually being used to mean something else
in a way that surprises you. The problem is, some people don't even understand how things fit in the normal way, so they can't
recognize when it is not fitting that way.
They might recognize when something doesn't fit in a big, clear
way, like putting a beard on a lady. Some people who are different can recognize that and would think it is very funny. But
other people might just think that is wrong, they might even think their eyes are giving them wrong information, because beards
and ladies should not go together, from what they learned.
But the interesting thing is, most people who are different
like humor a lot, maybe because it makes other people laugh, which is a friendly sound. When people are laughing, there are
good thoughts all around them and all around the room they're in. When people are laughing, they usually like other people
at that time.
So you should do humor with everyone, but if some people who
are different don't understand complicated jokes, you should pick jokes that are more clear and you should laugh so the person
knows it is a joke, and not something serious that he should be trying to add to his head about the world.
Some people know they're different, and some don't. Should
you ask someone who is different what condition he has? And if you don't really understand that condition, should you ask
him to explain it to you?
I like people to know how I'm different so they'll know why
I act in the ways I do, and so they might not act in ways I won't understand. And I would like them to learn about all kinds
of conditions, because how will they know about that person's world if no one tells them? Just like people who are different
can't learn about your world if you don't tell them about it. When no one knows anything about the other person's world, everyone
just stands there and doesn't know what to do because they're afraid to do something wrong.
So I think you should ask the person or his parents or friends,
politely. If they don't want to tell you, at least you tried and you should know that you did the right thing.
Some people don't mind being different. There are many good
things about being different. I noticed that when you don't understand other people who are different from you, many times
you're afraid of those people. But I noticed that the people who are different seem much more open about accepting you.
People who are different don't seem to be very prejudiced against
people who are different colors or different backgrounds or who have handicaps like no legs. Not being prejudiced is a good
thing.
Even though people who are different sometimes get upset about
things that seem like nothing to you, they are sometimes much calmer than you are in real emergencies. Maybe they don't think
quickly enough to understand that this is an emergency, or maybe they don't get as involved as you do with your feelings.
They use their thoughts more instead of their feelings and they do everything at their own set speed, no matter what the environment
or situation. This can be very helpful when everyone else is rushed and panicky.
People who are different sometimes understand animals very
well. Animals don't talk, which makes it harder for most people to understand them because you depend so much on talking.
But not talking actually makes it easier for some people to understand animals better.
People's talking can be hard to figure out because you use
many similar words to mean the same thing, like great and wonderful and excellent and terrific. You use opposite expressions
like Oh Joy, when you really mean something is not very good, like you have to clean the garage. You tell people you like
their new shoes when you really don't. You say sharp things, then you say you didn't really mean them. You use strange expressions
like Two peas in a pod, when you just mean something is like something else. This is all very complicated to figure out.
But animals make very clear and simple sounds, they usually
say what they mean, and they usually mean what they say. They show very clear and simple body signals, which is not like people,
who have lots of complicated body signals that change very fast.
And I think animals do some telepathy, I think their minds
send out signals which are very quiet, but most people have such a busy mind, so many thoughts jumping around in your mind,
you can't hear the signals or you have no room for them.
But some people who are different have minds which are much
quieter and not as busy, and sensitive nerves, so they can hear these signals and they have room to let these signals in,
and these signals are interesting enough to catch their attention, and simple enough to process.
People who are different can sometimes see things more clearly
than you can, because they see things more simply. Sometimes things are complicated and you do those complicated things better
than people who are different. But sometimes you worry too much about little things that are probably not going to happen,
or you worry about someone being mad at you or looking dumb, so you make simple things more complicated than they have to
be, and you don't do things you could have done if you didn't worry so much about what other people thought.
People who are different sometimes have simple words and simple
thoughts and simple ideas, but sometimes those are the best ideas. Maybe you could try them sometimes, maybe you would be
more relaxed. Then maybe you would be able to hear the animals.
So I think it is okay to be different.
On Star Trek The Next Generation there was an episode called
Tapestry. Captain Picard went back in time and changed some things he didn't like about his past, some of the things he had
done in his past. But when he came back to the present, everything had changed. Because of the changes he had made in his
past, he was a changed person in the present. He found out he didn't like this new person, so he went back to the past again
and changed it all back.
That episode was called Tapestry because a tapestry is a heavy
cloth with a complicated design woven into one solid piece. Every little thing about you and every little thing you do adds
together to form the tapestry of your life. If you go back and pull out part of the design, it changes the design.
So even if I could change my being different, I don't think
I would want to. I wouldn't want to make me a changed person from who I already am. Because I think I'm a good person and
I like myself. http://www.autism-pdd.net/brad.htm *************************************
Somebody Said ~ Author Unknown Somebody said a mother is an unskilled laborer ************************************** "Like Me"
I went to my dad and said to him, He runs in a funnyish jerkyish way He studies all day in a separate class His face looks kind of different from mine, And my father said, "Son, I want you to think Well I guess, I admitted, I've looked at his face; And when we're in Music, he sure loves to sing, And I know in the lunchroom he has lots of fun; And he's always so friendly, he always says hi, And his folks really love him. I saw them at school, So I said to my dad, Hey, you know that new kid? **************************************
Remember that he is, first of all, my child. ************************************** I am the Child ~ Author Unknown
His prison, his mind;they mean the same thing Ellen K Seiders Copyright ©2003 Ellen K Seiders
This analogy was written by a very
dear woman on a few of my autism support lists. I think it describes, very appropriately, what our children with Autism go
through, day in and day out. "You are walking barefoot across a room. You suddenly step on broken glass you did not know was there and pain shoots
up your leg. You hop, scream, curse perhaps, reach out to get your balance, eyes
may tear up, your arms flay about. This all makes perfect sense to you, you just
stepped on glass. But what about me, I am standing next to the broken glass in
hiking shoes, my toes are fine and I don't see any broken glass. I see YOU screaming,
what a hot head you are. You are hopping, hey I am standing right here, you could
bump me, what an inconsiderate fool you are. You curse, what an angry jerk you
are. You are waving your arms, hey you are trying to hit me, you are attacking
me, you hot headed jerk! You tear up, what an emotional basket case you are!
You grab me to get your balance, what an aggressive animal you are coming in here screaming, cursing, attacking me, gee you
can't even walk across the room without assaulting others. Boy could I teach
you a lesson. Interesting perspective ain't it?
Now the words broken glass are screamed and I see blood dripping from your foot.
Now I rush to help you and realize the pain you are in. Our problem is
the nt world is always in hiking boots and don't see the broken glass that surrounds our kids.
They look at us and wonder why we let our kids behave this way." ©Nedra Irwin ~ April 11, 2003 ************************************************************ "The Special Child" The child, yet unborn, spoke with the Father, "Lord, how will I survive in the world? I will not be like other children,
my walk may be slower, my speech hard to understand, I may look different. What is to become of me?" The Lord replied to the child, "My precious one, have no fear, I will give you exceptional parents. They will love
you because you are special, not in spite of it. Though your path throughout life will be difficult, your reward will be greater.
You have been blessed with a special ability to love, and those whose lives you touch will be blessed because you are special."
~ Author Unknown * * * * * * * * * * A MOTHER'S WISH LIST FOR A TEACHER Diane O'Rourke-Bankus © 2003 1. Please don't assume that you know what it is like to parent my child. The only person who can
possibly relate to my hopes and my dreams, my burdens and my fears, and the difficulties I face, is GOD!
************************************ Once upon a time, long, long ago, there lived a mighty king. His
kingdom was protected by an army of brave knights. Sir Strong, had great strength. Sir Smart had incredible intelligence and
Sir Brave had unsurpassed bravery. Each and every knight seemed to possess a unique talent. These knights were favored by
the king.
There was also another group of knights. These knights were not as
big, or as strong, or as brave as the other knights. The favored knights looked down on them and teased them. They called
them "special," but not because they admired their uniqueness. They used it as a term of ridicule. The "special" knights were
not allowed to join in the meetings, banquets or classes with the favored knights. They attended their own meetings, banquets
and classes, separate from the other knights.
Three of the "special" knights were tired of being separated from
the other knights. They were tired of being told that they were not as good or didn't measure up to the others. People didn't
realize how unhappy they were, because people believed that "special" knights should feel happy to have a place in the kingdom
at all.
The first "special" knight was Sir Down syndrome. He had beautiful
green eyes with crystal flecks that could see into your soul. The second of the "special" knights was Sir Autism, who had
very precise ways of doing things. Always making sure that everything was just right. The last was Sir Vegetable. He was the
smallest and the youngest of the "special" knights. He was blessed with a fighting spirit and a survivor's will. All were
brave, loving and pure of heart.
The favored knights did not see these attributes. They believed the
"special" knights were cursed by an evil witch. They did not see sparkling eyes -- they saw a funny slant to them. They did
not see precise planning -- they saw strange habits. They did not see inner strength -- they saw outward weakness. They only
saw the "special" knights as strange, slow and stupid. It was how they chose to see them -- as different. What they did not
realize is that the "special" knights were not cursed by an evil witch, but chosen by God, to teach others the virtues of
patience, acceptance, perseverance and love. Despite all their talents, these were things the favored knights knew nothing
about.
A fierce dragon had been terrorizing the kingdom. He frightened the
people with his fierce roar and breath of fire. Each knight had taken a turn trying to slay him. Sir Smart had used all his
brains but could not defeat the dragon. Even Sir Strong's incredible strength could not help. Sir Brave also failed.
The three "special" knights wanted to have a chance to slay the dragon.
The favored knights laughed and laughed. How could such small, weak knights succeed where they had failed? The king, who liked
the "special" knights, felt they would not be able to handle such a difficult assignment. He was worried that they might get
hurt or lost.
Our heroes would not be deterred. They set off to find the dragon
on their own. They carried no weapons, relying only on their unique talents. The "special" knights knew one thing the favored
knights did not. They knew no one knight could bring down such a dangerous dragon. They knew they had to work together, each
using their unique gifts. Sir Autism would plan the perfect strategy to corner the dragon. Sir Down syndrome would use his
empathy to find the dragon's weak point. Sir Vegetable would us his keen survival instinct to keep them all safe.
It did not take long for Sir Autism, with his superior planning skills
to find the dragon's lair. Sir Vegetable devised the safest way to approach the dragon. Now, it was up to Sir Down syndrome
to find the monster's weak point. He came face to face with the fiercest dragon he had ever seen!
"Dragon," he asked nervously, "why do you terrorize our kingdom with
your loud roar and fiery breath?"
"Why do you send vicious knights to slay me?" asked the dragon. "I
do not mean to scare anyone. I am a dragon. Dragons roar loudly and breathe fire. It is not my fault I am what I am. I will
always be a dragon and cannot change it."
The "special" knights thought about the dragon's answer. They had
often felt the same way. It was not their fault that the were the way the were. They couldn't change what they were.
"I would like to be your friend, but you must accept me for the way
I am," said the dragon.
His plight touched the hearts of the "special" knights because it
was very similar to their own.
"Dragon, we will accept you," said Sir Autism.
"And we would be glad to be your friends!" added Sir Vegetable.
The dragon agreed to travel back to the kingdom with the "special"
knights to share what they had all discovered. The king was very surprised to see the "special" knights come back alive. He
was even more surprised to see they had the dragon with them! The "special" knights told of their adventure and the king,
being a very wise king, understood the lesson immediately.
Dragons are only dragons. Fear and segregation are our true enemies.
"Sir Down syndrome, Sir Autism and Sir Vegetable, you three together
have accomplished what my best knights could not do. You have tamed a fierce dragon and brought peace to our kingdom. You
are true heroes and your names will live on in history forever!", declared the king.
"Please, your Highness," said Sir Down syndrome, "Down syndrome is
not my name, but a label given me by people who did not really know me. My real name is Zack and I would like to be known
as Zack from now on."
"Yes, your Majesty," said Sir Autism, "Autism is the label I was
given. My real name is Matt and I like it much better."
"And I, noble king, was given the label Vegetable because people
believed that I was useless like a vegetable. My real name is Alex," said Sir Vegetable.
"Henceforth", said the king, making a royal decree, "People in this
kingdom will be no longer labeled. They will be valued for who and what they are. All people shall be known as "special",
not in ridicule because of their differences, but in recognition of their unique talents. Everyone shall be welcome at our
meetings, banquets and classes. No one will be segregated!"
His words were met with a mighty cheer from the crowd and a loud
roar from a now friendly dragon.
If this were a fairy tale, everyone would now live happily ever after.
Unfortunately, not all stories end that way. Some in the kingdom could still not see the value in others. Some refused to
see it -- others simply were not capable of letting go of old stereotypes. These are the people who deserve our pity. The
truly heroic among us work, even to this day, to educate those who will not see and promote acceptance among all people in
our kingdoms. We open doors, knock down barriers and destroy false ideas. With each small success we spread a little "happiness
ever after." I think Sir Zack, Sir Matt and Sir Alex would be proud! ************************************
Recently while talking about the stress and whirl-wind activities
of life with kids, one of my friends said she coped with her day to day life by thinking of people in the world who have it
"worse off than me". She then looked at me and said, "Like you." Now, because I was shocked and totally unprepared for this
comment, I stared at her like a deer caught in headlights. I assume that this mother of four under 5, looks at my life as
"worse off" than hers because I have a child who has Down syndrome. Never before have I thought of my life as being "worse off" than
anyone else's. Is my life hectic? Yes - I have three children, a husband, a job, a home, and a very sweet little dog. I also
have a few hobbies I like to participate in. My children play soccer, baseball and softball, take art lessons and gymnastics,
and participate in after-school activities. Do I have extra work to do because I have a child with a disability? Absolutely!
Not only do I have to deal with all the normal things kids do, but I also have to know all there is to know about Down syndrome,
about Special Education laws, about my son's legal rights, about Estate Planning and setting up trusts, about how to talk
with my daughters about their brother, about how to talk with neighbors about Down syndrome, and yes, occasionally how to
talk with family members about my son. I also have to deal with the prejudices of others and I have to educate those people
- a not so easy task. But let me set the record straight. We are not "worse off" for having
a child with a disability. Our eyes have been opened to people and issues we would never have been exposed to otherwise. As
a firm believer in the old adage that things happen for a reason (not to mention, what goes around comes around), let me tell
you a few of the ways this child has changed my life. I have become more patient, a trait that has surely affected my relationship
with more people than just my son. I have learned tolerance, for those who have different abilities than I, for those who
have different opinions than I, for those who look different than I. I have been exposed to a whole new world of people whom
I never would have known if not for my son, people who spend their lives advocating for people with disabilities, people who
struggle with every movement yet keep on moving, people who get knocked down time after and time yet get up and continue to
try. I have met other parents who walk much the same path that I do and have been amazed by their strength and courage. I
have opened a door to a whole new career for myself that I would never have noticed if not for my son. I have seen wonderful
children learn about disabilities and say, "Okay, but he's still my friend." I have been deeply affected by my own daughters
who look at people with disabilities like the rest of the world ought to. I have experienced a love so deep for this beautiful
little boy that anyone who dares to cross him should be concerned about me. I am absolutely a better person than I was 10
years ago - without a doubt. Now, having said all that, would I trade my life to remove that extra
chromosome and give my son a chance at a "normal" life? Of course, I would. Most parents in my situation probably would. But
don't look at me - or any other parent of a child with a disability, if I may be so bold as to speak for all of us - as "worse
off". Our children are gifts to our lives and enrich us in ways no other parent could ever imagine. I don't want to be your
mechanism for coping and I also don't want or merit your admiration. I am just a Mom, hopefully a good one, doing what I have
to do for my kids. What I want for my family and especially for my son and my reason for writing this essay, is for you to
look at him through the eyes of acceptance, not pity. He is a beautiful, charming, sincere young man who has much to offer
his friends and family. Instead of looking at people who have disabilities with sorrow or pity - look at them and see what
they do bring to you. Look at each person for what they can offer, not for what they can't. Make our community a welcoming
place for all people. Learn what you can do. Seek out people who can help you understand - look to non-profit human service
agencies for guidance. In my role as Community Relations Coordinator for UCP Central PA, it is my purpose to be there and
answer your questions. But you have to ask those questions and you have to be willing to accept the answers. As I see it,
my family is not "worse off" than yours; my family is different than yours. And like yours, my family is beautiful. http://www.ucp.org/ucp_channeldoc.cfm/1/11/51/51-51/1714 ***********************************************
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In Brooklyn, New York, Chush is a school that caters to
learning disabled children. Some children remain in Chush for their entire school career, while others can be mainstreamed
into conventional schools.
At a Chush fundraising dinner, the father of a Chush child delivered
a speech that would never be forgotten by all who attended.
After extolling the school and its dedicated staff, he cried out,
"Where is the perfection in my son Shaya? Everything God does is done with perfection.
But my child cannot understand things as other children do. My child
cannot remember facts and figures as other children do. Where is God's perfection? The audience was shocked by the question,
pained by the father's anguish and stilled by the piercing query.
"I believe," the father answered, "that when God brings a child like
this into the world, the perfection that he seeks is in the way people react to this child."
He then told the following story about his son Shaya.
One afternoon, Shaya and his father walked past a park where some
boys Shaya knew were playing baseball. Shaya asked, "Do you think they will let me play?"
Shaya's father knew that his son was not at all athletic and that
most boys would not want him on their team. But Shaya's father understood that if his son was chosen to play it would give
him a comfortable sense of belonging. Shaya's father approached one of the boys in the field and asked if Shaya could play.
The boy looked around for guidance from his teammates. Getting none, he took matters in his own hands and said "We are losing
by six runs and the game is in the eighth inning. I guess he can be on our team and we'll try to put him up to bat in the
ninth inning."
Shaya's father was ecstatic as Shaya smiled broadly. Shaya was told
to put on a glove and go out to play short center field. In the bottom of the eighth inning, Shaya's team scored a few runs
but was still behind by three. In the bottom of the ninth inning, Shaya's team scored again and now with two outs and the
bases loaded with the potential winning run on base. Shaya was scheduled to be up. Would the team actually let Shaya bat at
this juncture and give away their chance to win the game?
Surprisingly, Shaya was given the bat. Everyone knew that it was
all but impossible because Shaya didn't even know how to hold the bat properly, let alone hit with it. However as Shaya stepped
up to the plate, the pitcher moved a few steps to lob the ball in softly so Shaya should at least be able to make contact.
The first pitch came and Shaya swung clumsily and missed. One of
Shaya's teammates came up to Shaya and together they held the bat and faced the pitcher waiting for the next pitch. The pitcher
again took a few steps forward to toss the ball softly toward Shaya. As the pitch came in, Shaya and his teammate swung at
the ball and together they hit a slow ground ball to the pitcher.
The pitcher picked up the soft grounder and could easily have thrown
the ball to the first baseman. Shaya would have been out and that would have ended the game. Instead, the pitcher took the
ball and threw it on a high arc to right field, far beyond reach of the first baseman.
Everyone started yelling, "Shaya, run to first, run to first."
Never in his life had Shaya run to first. He scampered down the baseline
wide-eyed and startled. By the time he reached first base, the right fielder had the ball. He could have thrown the ball to
the second baseman who would tag out Shaya, who was still running. But the right fielder understood what the pitcher's intentions
were, so he threw the ball high and far over the third baseman's head.
Everyone yelled, "Run to second, run to second." Shaya ran towards
second base as the runners ahead of him deliriously circled the bases toward home.
As Shaya reached second base, the opposing short stop ran to him,
turned him in the direction of third base and shouted, "Run to third." As Shaya rounded third, the boys from both teams ran
behind him screaming, "Shaya run home." Shaya ran home, stepped on home plate and all 18 boys lifted him on their shoulders
and made him the hero, as if he had just hit a "grand slam" and won the game for his team.
"That day," said the father softly with tears now rolling down his
face, "those 18 boys reached their level of God's perfection."
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