Tuesday, October 27, 2009

Ten Things

My sister, Alyssa, has had epilepsy and some mild autistic tendencies since she was 17 months. She is now 19 years old and her medical conditions have caused many mental and physical delays. Today I went with my mom to a local organization that provides many services for children with special needs and their families. I have been amazed and overwhelmed to learn all that is available... we haven't pursued much outside help in the past.

But as I was looking through all the information we received, I found this amazing article: Ten Things Every Child With Autism Wishes You Knew. Even after living with my sister for 19 years, I learned so much from this article--both in how to treat other children with autism and some of the struggles my own sister may have. Some of these are things everyone of us should keep in mind with any child with any disability (1, 3, 7, 10). As for the rest, if you ever wondered how to relate to children with this kind of disability or want to understand what they and their families deal with every day, this article is a wealth of information. This is just parts of the article. For the whole thing, see http://www.southflorida.com/sfparenting/sfe-sfp-autism,0,6196233.story

Ten Things Every Child With Autism Wishes You Knew.

Some days it seems the only predictable thing about it is the unpredictability. The only consistent attribute -- the inconsistency. There is little argument on any level that autism is baffling, even to those who spend their lives around it. The child who lives with autism may look "normal" but his behavior can be perplexing and downright difficult.

Autism was once thought an "incurable" disorder, but that notion is crumbling in the face of knowledge and understanding that is increasing even as you read this. Every day, individuals with autism are showing us that they can overcome, compensate for and otherwise manage many of autism's most challenging characteristics. Equipping those around our children with simple understanding of autism's most basic elements has a tremendous impact on their ability to journey towards productive, independent adulthood.

Here are ten things every child with autism wishes you knew:

1. I am first and foremost a child. I have autism. I am not primarily "autistic." My autism is only one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)? Those may be things that I see first when I meet you, but they are not necessarily what you are all about.

As an adult, you have some control over how you define yourself. If you want to single out a single characteristic, you can make that known. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. Defining me by one characteristic runs the danger of setting up an expectation that may be too low. And if I get a sense that you don't think I "can do it," my natural response will be: Why try?

2. My sensory perceptions are disordered. Sensory integration may be the most difficult aspect of autism to understand, but it is arguably the most critical. It his means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you but I am really just trying to defend myself. Here is why a "simple" trip to the grocery store may be hell for me:

My hearing may be hyper-acute. Dozens of people are talking at once. The loudspeaker booms today's special. Musak whines from the sound system. Cash registers beep and cough, a coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can't filter all the input and I'm in overload!

My sense of smell may be highly sensitive. The fish at the meat counter isn't quite fresh, the guy standing next to us hasn't showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they're mopping up pickles on aisle 3 with ammonia….I can't sort it all out. I am dangerously nauseated.

Because I am visually oriented, this may be my first sense to become overstimulated. The room seems to pulsate and it hurts my eyes. The pulsating light bounces off everything and distorts what I am seeing -- the space seems to be constantly changing. There's glare from windows, moving fans on the ceiling, so many bodies in constant motion, too many items for me to be able to focus (I may compensate with "tunnel vision"). All this affects my vestibular and proprioceptive senses, and now I can't even tell where my body is in space. I may stumble, bump into things, or simply decide to lay down and try to regroup.

3. Please remember to distinguish between won't (I choose not to) and can't (I am not able to). It isn't that I don't listen to instructions. It's that I can't understand you. When you call to me from across the room, this is what I hear: "*&^%$#@, Billy. #$%…" Instead, come speak directly to me in plain words: "Please put your book in your desk, Billy. It's time to go to lunch." This tells me what you want me to do and what is going to happen next. Now it is much easier for me to comply.

4. I am a concrete thinker. This means I interpret language very literally. It's very confusing for me when you say, "Hold your horses, cowboy!" when what you really mean is "Please stop running." Don't tell me something is a "piece of cake" when there is no dessert in sight and what you really mean is "this will be easy for you to do." When you say "Jamie really burned up the track," I see a kid playing with matches. Please just tell me "Jamie ran very fast."

Idioms, puns, nuances, double entendres, inference, metaphors, allusions and sarcasm are lost on me.

5. Please be patient with my limited vocabulary. It's hard for me to tell you what I need when I don't know the words to describe my feelings. I may be hungry, frustrated, frightened or confused but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation or other signs that something is wrong.

Or, there's a flip side to this: I may sound like a "little professor" or movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits because I know I am expected to respond when spoken to. They may come from books, TV, or the speech of other people. It is called "echolalia." I don't necessarily understand the context or the terminology I'm using. I just know that it gets me off the hook for coming up with a reply.

6. Because language is so difficult for me, I am very visually oriented. Please show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of consistent repetition helps me learn.

7. Please focus and build on what I can do rather than what I can't do. Like any other human, I can't learn in an environment where I'm constantly made to feel that I'm not good enough and that I need "fixing." Trying anything new when I am almost sure to be met with criticism, however "constructive," becomes something to be avoided. Look for my strengths and you will find them. There is more than one "right" way to do most things.

8. Please help me with social interactions. It may look like I don't want to play with the other kids on the playground, but sometimes it's just that I simply do not know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, it may be that I'm delighted to be included.

I do best in structured play activities that have a clear beginning and end. I don't know how to "read" facial expressions, body language or the emotions of others, so I appreciate ongoing coaching in proper social responses. For example, if I laugh when Emily falls off the slide, it's not that I think it's funny. It's that I don't know the proper response. Teach me to say "Are you OK?"

9. Try to identify what triggers my meltdowns. Meltdowns, blow-ups, tantrums or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented. Keep a log noting times, settings, people, activities. A pattern may emerge.

10. Love me unconditionally. Banish thoughts like, "If he would just……" and "Why can't she….." You did not fulfill every last expectation your parents had for you and you wouldn't like being constantly reminded of it. I did not choose to have autism. But remember that it is happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you – I am worth it.

And finally, three words: Patience. Patience. Patience. Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. It may be true that I'm not good at eye contact or conversation, but have you noticed that I don't lie, cheat at games, tattle on my classmates or pass judgment on other people? Also true that I probably won't be the next Michael Jordan. But with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh.

They may have had autism too.

All that I might become won't happen without you as my foundation. Be my advocate, be my friend, and we'll see just how far I can go.

Wednesday, October 14, 2009


In reading C.S. Lewis' "Surprised by Joy," I found a description of what I was attempting to convey in my previous post. Obviously, it is done much, much better, seeing as how it is Lewis. :-) But if you want to understand some context for my appreciation of this passage, you should read my previous post first. Or after. I suppose either way works, as long as you read them together.

Lewis on Joy

I saw that all my waitings and watchings for Joy, all my vain hopes to find some mental content on which I could, so to speak, lay my finger and say, "This is it," had been a futile attempt to contemplate the enjoyed. All that such watching and waiting ever could find would be either an image... or a quiver in the diaphragm... I knew now that they were merely the mental track left by the passage of Joy-not the wave but the wave's imprint on the sand. The inherent dialectic of desire itself had in a way already shown me this; for all images and sensations... soon honestly confessed themselves inadequate. All said, in the last resort, "It is not I. I am only a reminder. Look! Look! What do I remind you of?"

Joy itself, considered simply as an event in my own mind, turned out to be of no value at all. All the value lay in that of which Joy was desiring... Inexorably Joy proclaimed, "I myself am your want of something other, outside, not you nor any state of you..." the naked Other, imageless (though our imagination salutes it with a hundred images), unknown, undefined, desired.

My Home... His Realm.

Well, it has been awhile since I have written here. Whether that is due to a lack of interesting topics or a lack of time, I'm not quite sure. I have been too busy enjoying my life over the last month or so to worry about blogging. I've spent time learning more about my job while my mom and siblings settle into their school routine. It's been wonderful to be with my family without having to worry about school or leaving for a job or the many other things that have consumed my time these last few years.

We drove to Nebraska this past weekend for my grandparents 50th wedding anniversary. We had a wonderful time, though it was far too short... and the drive too long. 10 hours one way is crazy. I do not expect to ever complain about those nice 5-8 hour drives again.

It was on those drives, though, that I learned so much of God from the amazing beauty and great vastness of the plains. The mountains in Colorado are beautiful examples of God's majesty and strength. But only in the prairies do I ache for sheer happiness and peace. I was reminded by C.S. Lewis' description of Joy in "Surprised by Joy." He calls it "an unsatisfied desire which is itself more desirable than any other satisfaction." Unsatisfied, because that kind of Joy--the kind where you ache while you have it and long for it when it is gone--is only a small realization of that purpose for which we were ultimately created; to know God and dwell forever in His presence. And for me, every part of the prairies speak of Him... and these thoughts were inspired as we drove.

As the wind whisps across the prairies, sometimes soft and gentle, sometimes rough and strong, I think of that Scripture where the Lord appeared, first as a "great and strong wind" and soon after as "a still small voice." In all the winds, strong or gentle, I know His glory and feel His love.

In the old country churches we passed, with spires reaching towards heaven, I was reminded of a great longing we all have for God. As the spires reach upwards, we ourselves are constantly reaching and striving for something greater than ourselves.

With the annual blazing fires, designed to cleanse the earth and prepare it afresh for new crops, I see the fire of His cleansing as He renews our land and prepares our hearts to worship. And in the billowing smoke that rises to the heavens, I see that worship as the saints praise His mighty name.

But it is the vastness of the prairie that reveals HIM as nothing else does. In the great, open spaces, I feel as nowhere else His open arms, stretched out to me in never ending love. It is in the endless plains, where I see forever, that I see best His eternal presence and greatness and glory. Gazing at the infinite sky and land, I know His sovereign might over all that is.

This beautiful, endless, vast prairie-land is mine to call home. But it is also eternally His. And so in knowing it, I come to know Him better.