We All Need to be Understood

After my little vent yesterday I thought it would be good for me to repost this 2009 blog entry just to keep it in perspective.

Autism is a puzzle with more curves, corners and pieces than any of us know.

One of the hardest things for people with AS is empathy. Coupled with the inability to appropriately initiate social interactions, children with AS have little understanding of how their actions and words affect others. Most neuro-typical children struggle with it, but can be easily taught to imagine how someone else feels. AS kids can’t imagine that.

On the other hand, all relationships are reciprocal. So, those of us who interact with someone that has AS need to also be able to empathize with how THEY are feeling or seeing or why they are behaving the way they are behaving. Only, we can’t. We can’t imagine that.

Imagine that sounds are painful. The vacuum cleaner sounds like a fire alarm. The fire alarm sounds like a jet plane. The water gurgling through the radiator stops you from wanting to play in your room alone.

Imagine that being in a crowded room or restaurant makes you want to spin in circles and hide under the table. If someone strange sits near you, you won’t be able to finish the meal. You’d rather just make loud silly noises to make yourself feel better.

Imagine that only six or seven foods taste good to you. Maybe it’s not the taste…but they feel and smell safe, so you’ll eat them. Imagine that you could not try new foods, even if they are pretty ones, because you don’t know them.

Imagine that you can’t understand what people’s faces are saying. They get all twisted up, twitching, smiling, frowning all the time they are talking. They want you to look them in the eye, but if you do that you won’t be able to concentrate on what they are saying. It hurts to look someone in the eye. Sometimes you can’t hear the words because you are too busy trying to figure out the look on their face.

Imagine that collars, tags and zipper pockets make your skin itch. Your Mom bought PJs and the “out parts” of the sleeves are too tight on your wrists. Makes it hard to fall asleep.

Imagine that you couldn’t tell when someone didn’t want you to touch them anymore. You like touching people’s clothes or licking them or blowing on them or just getting as close as possible. Why won’t they let you do that? It’s how you tell someone you like them a lot. How else are you supposed to do it?

Imagine that you can’t answer open-ended questions without anxiety. So instead, it feels better to just say “AAAHHHH!!!!” Why does everyone want to know if I “like school” anyway? I don’t know.

Imagine that making changes or transitions from one thing to another is really, really hard for you. All you need is a little warning that something else is going to happen next…but most people won’t do that. Imagine that taking an alternate route home to avoid traffic would make your world spin out of orbit for a while and you’d cry a lot about it.

We could all use a little empathy.

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96 Mazes in 45 Minutes

Yesterday was chaos in our house. Andy and a friend of ours (who shall remain nameless to protect his identity but will forever be my new BFF) begain tearing out and replacing windows in our house. This Old House, 80 years old or so, had all it’s original windows. Full of character, individual window panes, three large bay windows…also full of holes, rot and uninvited bugs…the windows HAD to go!! This place is freezing in the winter and so HOT in the summer. The kids who live upstairs in the dormers tell me their rooms are habitable, “weather permitting.”  So Andy spent the day with BFF tearing out and replacing as many windows as daylight allowed.  (Ten down…eighteen to go).

Liam and Erin had back-to-back basketball games after lunch. I’d been preparing Colin for a couple of days for the newly begun basketball season. Last year, he went to all the games but spent each hour with his hands over his ears in fear of the buzzers and ref. whistles.  After a few weeks, he figured out how to watch the digital time countdown each quarter so that he’d know when to put his hands over his ears for the buzzers but the whistles are unpredictable.  As soon as we’d pull in the parking lot, his hands were cemented to his little ears. One time I brought Smarties (his favorite candy) along to a game to try to coax his hands off his ears. Instead, he lined the Smarties up on the bleacher in front of him, covered his ears with his hands and bobbed his head up and down picking up each Smartie with his tongue!

So…he opted out of going to the first game.  I left and he stayed home with Daddy and BFF…and hours of television to keep him company.

Erin played great! Didn’t win the game, but was very close.  Dashing home to drop her off before heading on to Liam’s game I (literally) ran into Colin in the living room.  By now, he’d probably watched five hours of TV or so (all the while running his trains in circles in the living room.) I can’t blame Daddy for letting the TV babysit…after all, he had windows to put in and I was gone.  But, this kid was bored!!! 

“I’m Really Tired Out” he said. Code for “I don’t know what to do.”

ME: “Do you want to go to Liam’s game?”
HIM: “Sure…I’ll go. Can I take a snack?”
ME:…”Um, yes. But there will be whistles and buzzers.”
HIM: “That’s okay. I’m really tired out.”

So, boredom conquered fear and off we went. He did really well at the game, too. Only freaked out once! Not bad. And Liam’s team won, so Colin proudly ran onto the court and interrupted the victory huddle to give his proud teenage brother a hug.  Liam, in all his graciousness, high-fived and hugged back in front of his whole team.

Once we got home, Colin couldn’t figure out what to do with himself. Typical weekend non-ritual hyperactivity. If only there was school 7 days a week, then he’d know what to do with himself. That schedule makes sense. Sleeping in, lounging around, lolly-gagging and generally being lazy don’t compute in his little Aspie brain. What??? What???

About 5:00, he bounced (yes, bounced. Not much walking…usually running, bouncing, crawling or slithering to get from place to place) into the kitchen. Sat down at the island and announced, “I’m BORED.”   First time ever he had voiced that feeling.

I knew what he wanted. Soemthing to do that he really liked to do. I said, “Okay…(sigh)…I have a surprise for you.” Walked back to the hiding place in my closet where all Christmas presents are stored. Opened the Target bag and took it out. It was supposed to be a gift under the tree, but since I’ve gone through five of these things in the last month, I figured I’d have to give this one up before Christmas. Walked back to the kitchen with surprise hidden behind my back. Popped it out and showed Colin.

“OOOOHHHHH!!!!!! AAHHHHHH!!!!!” Bounce. Bounce. Bounce. Squeal!!

A book of mazes. 96 Full color mazes. Ages 6-8.  Hours of entertainment for your school age child!

Colin opened to page one. Smashed down the center so it would lay flat. “Light up Pen”  in hand…ready, set, go!!!!

Half hour later he put a bookmark in the place he stopped so that he could finish after supper. The minute his supper (which he didn’t eat) was over, right back to the book.

Finished it in less than 45 minutes. Hours of entertainment….my ass!!! PFFFTTT. False advertising! I want my money back! 96 Mazes for kids older than him finished in less than 45 minutes.

He’s whined all day today for another maze book. If I don’t make it out to find one tomorrow, I’m in deep, deep DOO DOO when I pick him up from school. Trouble is, they don’t make too many maze books for kids.

Maybe I’ll start a benefit drive…locate mazes for me please at all costs!  Top dollar paid for mazes!  Maybe I’ll have to learn to draw mazes, (yikes!).

It’s truly one thing that he loves and loves and loves to do. I’ll go crazy, I’m sure, finding mazes that challenge him as he grows older.

But I’m going to laugh out loud and cheer and pump my fists when he lands a job as an architect, city planner, math teacher or neuropsycholgist. Now those are some jobs with mazes to figure out, babe.

Imagine Yourself as Someone Else

 

Autism is a puzzle with more curves, corners and pieces than any of us know.

One of the hardest things for people with AS  is empathy. Coupled with the inability to appropriately initiate social interactions, children with AS have little understanding of how their actions and words affect others. Most neuro-typical children struggle with it, but can be easily taught to imagine how someone else feels. AS kids can’t imagine that.

On the other hand, all relationships are reciprocal. So, those of us who interact with someone that has AS need to also be able to empathize with how THEY are feeling or seeing or why they are behaving the way they are behaving. Only, we can’t. We can’t imagine that.

Imagine that sounds are painful. The vacuum cleaner sounds like a fire alarm. The fire alarm sounds like a jet plane. The water gurgling through the radiator stops you from wanting to play in your room alone.

Imagine that being in a crowded room or restaurant makes you want to spin in circles and hide under the table. If someone strange sits near you, you won’t be able to finish the meal. You’d rather just make loud silly noises to make yourself feel better.

Imagine that only six or seven foods taste good to you. Maybe it’s not the taste…but they feel and smell safe, so you’ll eat them. Imagine that you could not try new foods, even if they are pretty ones, because you don’t know them.

Imagine that you can’t understand what people’s faces are saying. They get all twisted up, twitching, smiling, frowning all the time they are talking. They want you to look them in the eye, but if you do that you won’t be able to concentrate on what they are saying. It hurts to look someone in the eye. Sometimes you can’t hear the words because you are too busy trying to figure out the look on their face.

Imagine that collars, tags and zipper pockets make your skin itch. Your Mom bought PJs and the “out parts” of the sleeves are too tight on your wrists. Makes it hard to fall asleep.

Imagine that you couldn’t tell when someone didn’t want you to touch them anymore. You like touching people’s clothes or licking them or blowing on them or just getting as close as possible. Why won’t they let you do that? It’s how you tell someone you like them a lot. How else are you supposed to do it?

Imagine that you can’t answer open-ended questions without anxiety. So instead, it feels better to just say “AAAHHHH!!!!” Why does everyone want to know if I “like school” anyway? I don’t know.

Imagine that making changes or transitions from one thing to another is really, really hard for you. All you need is a little warning that something else is going to happen next…but most people won’t do that. Imagine that taking an alternate route home to avoid traffic would make your world spin out of orbit for a while and you’d cry a lot about it.

We could all use a little empathy.

No Zipper Pockets

Sensory Integration Disorder (SID) is the brain’s inability to correctly interpret the information it receives from the senses. Clothing tags feel like sandpaper.  Vacuum cleaners sound like fire alarms. Food is tasteless.  Monday might be a day for hypersentivity and Tuesday might be a day for hyposensitivity. The rules change with the wind.  SID often rides the waves with ADD/ADHD, OCD and Asperger’s Syndrome or other Autism spectrum disorders. Or, it can stand alone.

SID is also now officially part of our family.

We’ve always known that Colin is “wired” a little differently. We just didn’t know what wiring was used at his creation.

It would explain why he cried as an infant when I dressed him in turtlenecks. Golf shirts or button down shirts are extremely stressful. No collars, no way, no how. Smelling things that no one else can was always what we deemed “weird.”  Did you know how “stinky” the paper on a doctor’s office exam table is?  He can’t sleep under the sheets on his bed. I thought he was just being obsessively neat by not wanting to mess up his bed. Turns out…the sheets make his feet feel hot…so, surface sleeping only.

New clothing goes over like a fart in church.  Colin is never impressed with new clothing. Rather the opposite. He wants nothing to do with it and stresses and cries if we ask him to put something on that he’s never worn before. Makes shopping a true treat. It could be the smell or the texture. It could be anything or nothing at all…but he’ll flat out refuse new shirts, pants and jackets until he can warm up to them a bit.

When he was licking the sidewalk last summer, we thought…how strange!  But, now that he’s moved on to putting toys in his mouth, we know why.  He LOVES superfast rollercoasters and teacup rides…he’d literally jump on our trampoline for hours if allowed… but hates to be swung around by the arms or turned upside down. His perception of where his body is in relation to his surroundings is completely different than ours.

If you offer him a handshake or a high five…don’t be offended if he looks at the floor and blows a raspberry. If you ask him a question, don’t be alarmed if he sits down and shuts his eyes. He’s not being rude…he just doesn’t know if you’ll feel, smell or sound good if he answers you.

If Colin comes to your home and has to eat a meal with you…don’t feel bad if he’ll only eat the foods that are safe in his world. Since he was a baby, food has not motivated him. There is a menu of about seven things that are sure to bring smiles. He discriminates based on texture and he could care less about taste. Home runs for sweet stuff or bland carbs.

He’ll separate himself from a crowd, or cover his ears, shut his eyes and hide away somewhere.  If you look him in the eye, don’t be distressed if he sits down on the floor, hides under the pew or puts his head down when you ask him a question. Eye contact is like nails on a chalkboard when he doesn’t know you.

But…he is five years old and has been reading for more than 2 years. He loves phonics and argued the idea with me today that “ph” should sound like “f.” Made perfect sense to him. He finds complex patterns in words and designs. He loves numbers and is obsessed with anything ending in a 0000.  The hymn books at church are a guaranteed source of distraction while he searches for 100, 200, 300 etc… He does simple addition and subtraction in his head, yet has never been taught how to do math. He plunks out tunes on the piano that he’s heard, but no one’s taught him.

It will be an interesting ride!  

Getting dressed this morning a new rule was introduced. No pants or shirts with zipper pockets. It took three tries through the pants drawer to find a suitable garment.  No explanation as to why…just no zipper pockets.

So…we’re in for a treat with this child. 

An amazing, complex, brilliant, sweet, sensitive, irritating, frustrating, loving and beautiful child.