Left, Left, Left right left

I have a ritual which I do each night once I climb into bed. I lay face up and figure out which side is left and which is right. Then I lay face down and do the same. Then I cross my legs while face up and identify which is right and left, and then cross my legs while face down. This helps for a number of reasons. It gives my brain the signal that it’s time for sleep. It helps to orient me in space. And, most importantly, it helps me practice “right” and “left.”

Seventeen years after the concept was first introduced, I should have the notion down. For everyone else the knowledge seems to come naturally, for me, I have to conciously think it out, make the L, identify that that is the left side. There is a process to knowing, rather than an instinct.

This became a particular issue when I attempted to take Tae-Kwon-Do my freshman year. In elementary and middle school I had been in Karate and done quite well, winning trophies in several tournaments. So I couldn’t figure out why Tae-Kwon-Do was so impossible for me. After a bit of contemplation, I remembered that karate was taught by instructors who stood with their backs to us, so I could always copy the moves until muscle memory took hold. In Tae-Know-Do, we stood in a circle around the instructor, so I was always in a different orientation relative to him. As a result, I had to first determine which arm he was moving and in what direction, and then figure out how to do the same with my own body. Then he’d turn and I’d gain a new perspective and trying to combine the data would totally throw me off. After three weeks, I dropped the class.

I wonder if this is an Aspie trait or simply an idiosyncracy of mine. Any thoughts?

4 Key Questions: Tourette’s Edition

This post is a continuation of the Ask an Aspie post proposed by Littlefluffycat. She asked the following questions:

What’s the hardest thing? What’s the easiest thing? What do you wish everybody knew? How should parents explain if needed?

Yesterday I answered these questions for autism. Today I will answer them for Tourette’s.

What’s the hardest part?

The hardest part of having Tourette’s (TS) is explaining it to children. Working in the children’s section of a library, I have several curious onlookers a day wondering what I am doing with my neck, or why I am making weird noises. At my friends’ houses it is even more difficult as the siblings have seen me before the TS-onset and know I wasn’t always like this. How do you explain TS to a child in a way that they will understand but that will not make them fear they will get it as well? I usually ask the child to tell me what they think it is, and go from there. One boy said it was sort of like the hiccups, and I agreed, saying it was similar to a case of the hiccups that never goes away. But it seems I should have a more cogent response.

What’s the easiest thing?

The easiest thing about my TS is having it at college. No one wants to look insensitive or foolish so very few people stare or make comments. It does create a weird separation however between campus and the “real world”.

TS has also made some aspects of my life easier. I am less inhibited in action and speech now that I have tics. People are going to turn and stare anyway, so I might as well give them something to stare it. I am much more willing to wear louder colors and behave in a less restricted fashion now then pre-TS.

What do you wish everyone knew?

I wish the general population knew that Tourette’s Syndrome is not deliberate or planned. It isn’t bad behavior or “acting out”. Tourette’s is a neurological condition, which happens to present in an attention-generating fashion.

I also wish people were more familiar with corprolalia (involuntary cursing), and the fact that it is quite rare (only between 8 and 13% of individuals with TS have corprolalia). I wish the media didn’t always present TS individuals as having corprolalia, and that more positive images of people with TS were used in general.

I wish people I associate with knew that it was okay to ask questions or be curious (I know I would be). I also hope they know that if I am really driving them to distraction they can ask me to leave until I get my tics under control. I’d hate my tics to put people under unneccesary duress.

How should parents explain?

I think the public is generally familiar enough with TS that explaining would be rather simple. I think, as always, it is best to put the child first. “This is my son X. He’s in 3rd grade and plays the tuba. He has Tourette’s Syndrome which means he makes noises and movements that he can’t control. He also has some difficulties with paying attention to the task at hand, and needing things just so. Did you know he won the spelling bee this year? Which kid is yours?” This gives the disorder a human face, and prevents the child from being singled out as “The Tourette’s kid.” Instead he is, “X, the spelling bee champ, who happens to have TS.”

I think it must be more difficult to explain it to the actual child. I was fortunate to have a late-onset Tourette’s, so I was already generally aware of the syndrome and able to do most of the research on my own. I would speak as positively as possible to the child, avoid bringing exessive negative attention to the tics, and emphasize your child’s strengths and similarities to others rather than his differences.

Do you have something you are dying to know about autism or TS? Be sure to ask on the Ask an Aspie page to your right.

4 key questions: Autism edition

New Ask an Aspie post. This time the question comes from littlefluffycat. She asks:

What’s the hardest thing? What’s the easiest thing? What do you wish everybody knew? How should parents explain if needed?

I think I’ll answer these questions twice, today for autism and tomorrow for Tourette’s.

4 Key Questions: Autism Edition

1. What’s the hardest thing?
This, one, I believe, requires two answers.
Physically, the hardest aspect is my auditory defensiveness. How do you explain to a group of teenagers that their loud music is physically painful and actually get them to respond to you? How do I manage days like one which occurred over Springfest where individuals were screaming in a non-predictable pattern two seats over from us in the cafeteria and I needed to be escorted out by a friend? Where is the middle ground for television viewing between myself and my near-deaf father?
Socially, the most difficult aspect is my blindness to people’s discomfort. I find it nearly impossible to tell the difference between someone pretending to be annoyed in a joking manner and someone being actually bothered or troubled by what I’m saying. Because of this I’ve inadvertently hurt    people I care deeply about. My whole family is made of line-pushers by nature; unfortunately none of us can tell when we’ve pushed it too far.

2. What’s the easiest thing?
The part of my life which my ASD has made easiest is entertaining myself. I’ve developed enough hobbies and activities that I can do alone that having all my friends out of town or otherwise occupied is not particularly troubling, except perhaps to my over-anxious mother. Some people cannot go more than a few hours without seeing another person; I find it impossible to go more than a few hours without ample private time.
I also think having an ASD makes it easier for me to connect to other individuals with ASD. Lawrence and I seem to understand each other intuitively; Charger and I had interactive play with spontaneous speech less then an hour after I met him.

3. What do I wish everyone knew?
I wish the general public knew how hard people with ASD have to work to appear “normal” and to fit society’s expectations. How stimuli which is distracting to an individual with ASD might go unnoticed by most neurotypical people. How complicated society’s rules are and how difficult it is to learn the nuances. I wish people could appreciate this fact and thus be slower to judge those who might appear spoiled or rude.
I wish parents of kids on the spectrum knew that the notion of a window period is false. That some kids simply need to develop in their own time. That some kids really do start talking or signing at 6 or even 10. That even if your child never learns to speak, he can be vital to a society. I hope they know to never give up on their children, and to dream big.
I also wish that parents knew that adults on the spectrum are not their enemies. That even though some of us can communicate and interact seamlessly now that we may have been in the same place as their son or daughter just a decade or so ago. That we cannot speak for their children, but we can offer valuable insight. That few of us doubt that every parent’s wish is to do what is best for their child and will provide their child with the most limitless future, but we simply want parents to know that growing up to be an adult on the spectrum is not a terrible outcome. That there are adults with autism living happy, productive, fulfilling lives, both independently and with assistance, and that autism is not something to fear, but rather something to embrace.

4. How should parents explain?
I think this is the toughest question. I wish I had a good answer. How do you explain autism to the well-meaning grandmother at the park or the disproving cashier at the store? How especially can this be done in full hearing range of the child or his friends or siblings? I haven’t yet come into a situation where I needed to defend Lawrence, or Josh, or Charger to Joe Public, but I imagine the day is not far off.
It seems that in situations where the individual is not likely to be met again (like a fellow shopper at the grocery store), no explanation is necessary. Ignore the starers and complainers, and thank the grandmothers for their advice and carry on. When browsing the aisles at Walmart, Lawrence was being, well, Lawrence. He kept asking for my hands for him to bounce his on, and he was flicking his fingers and humming a tune. Did people stare? Probably. But I kept my eyes and attention focused on Lawrence, on keeping him happy and not overstimulated. So people may have seen a teenager and a child acting rather bizzarely, but they also saw two people having a good time and embracing the moment. The idiosyncracies fall to the way-side when you’re simply watching a child have fun on his own terms.
At times when you will see the individual again (like a fellow mom at the PTA meeting), remember this is your change to educate someone. Don’t confuse the person with jargon and throw needless information out there. Talk about your child. Talk about what makes him exceptional and also what makes him just like other kids. Something like, “That child you’re staring at is my son, X. X is in kindergarten and he has autism. For X, this means he is particularly good at noticing details and building towers, but he has some difficulties with sharing with his peers. You’ll notice the flourescent lights above us are flickering; they are most likely distracting him, and he is using that hand motion to calm his overwhelmed nervous system. And those yellow plugs in his ears are to block out the rebound noise from the speakers. Which kid is yours?” This gets out the information you need without sounding insulting or defensive. But I imagine it doesn’t work in all situations.

Tune in tomorrow for the TS edition. And don’t forget to submit some new questions to the Ask an Aspie page on your right.

Memorial Missive or Cale vs. fireworks

Memorial Day, here in the US, is a way we honor veterans who died in combat. It is a day of parades, barbecues, gallavanting, and unfortunately, for those with sensory defensiveness or PTSD, fireworks.

Loud, obnoxious, and in my state, illegal, these works of the devil are the bane of my existence, and the reason July 4th and Memorial Day are my least favorite days of the year.

They manage to grate on several levels. They are excepti0nally loud. They are not set off in a regular pattern, and are thus unpredictable. They continue until late into the night, interrupting precious sleep cycles. And, worst of all, they are ubiquitous; there is no place you can hide to escape them.

Over the years, I’ve developed a few techniques to escape their horror:

• hide out in a friends cement basement (it mutes the sound)
• Wear noise-cancelling headphones
• Play loud but predictable music to counter the fireworks (Josh Groban is an excellent choice)
• Self-soothe by rocking gently

By combining these four tactics, days with fireworks become almost bearable.

But, if you are considering setting off these evil inventions this year, pause for a second to consider the sensory defensives in your area, and watch the televised version instead.

Auditory Stimming

The other day (over a month ago, in actuality, but for the sake of the story, “the other day” works well), Lawrence and I were jumping on the trampoline (as usual).

When we began to jump I made up a silly song about jumping on the trampoline, and I repeated it ten or eleven times in a sing-songy voice. Then I realized it was probably more annoying then soothing and stopped. After a minute or so, Lawrence began making a sort of humming noise in his throat. But he seemed to be getting angry, he was frowning and batting at his skull the way he does when something is bothering him.

I considered my options and thought that maybe he wanted the song back. I began to sing some nonsense syllables and he noticeably relaxed. He continued his humming and I continued my singing for quite a while and we totally had a blast.

Two young autists hopping around to the sounds of some auditory stimulation. Could you think of a better way to spend the afternoon?

Ask an Aspie: Living in a Dorm

Welcome to Part 3 of the Dorm Life series. You can find part 1 (Choosing) and part 2 (packing) here and here, respectively.

In order to live in a dorm, you first have to move in. The school will supply the times during which you can get your key and when there will be people available to help you move. If you are uncomfortable with the notion of other people handling your stuff, get the key and then leave. Come back after the upperclassmen have dispersed and move your items in peace. Of course, when you are lifting the refrigerator, you might wish you had two senior football players to help you…

Once your items are in your room, do not, under any circumstances, unpack! Remember that you will be living in this room for 10 months. You need to carefully choose how it will be set up, and will not be able to make these decisions on the spur of the moment. If you followed my packing directions, you’ll have a bag with what you need for 2-3 days. Live out of that until the last possible moment. Then set up your room according to your detailed plans. It will save you the hassle of trying to shift everything around in a room fully unpacked later.

Meeting people: In college, it is customary to leave your door open when you are not studying or working. This lets people know that you are available to be spoken to. If you are consistent, it will also let people know that when the door is closed you are not to be bothered unless there is an emergency. You will likely attend some sort of gathering of all the people on your floor where rules will be set in place such as quiet times and the single or double sex nature of the bathroom. This will be the time to introduce yourself, probably with your name, intended major, hometown, and hobbies. This would be a good time to mention your special interest, but keep it down to less then three sentences. Keep an ear out for other students who might have a similar interest; this will be an easy conversation opener. Now would also be a good time to mention what videogame systems you brought, and indicate that people should drop by if they would like to play.

Dining: Although it might be stressful, and loud, and otherwise unpleasant, try to get to the dining hall once a day. It guarantees you’re having a meal not consisting of solely Ramen noodles (perhaps you’ll even eat a vegetable), and it makes for easy socialization. You ask what the person is eating and if it’s good. If it is, you mention you might try it, if it isn’t, you make a derisive  comment about school food. Then you go and actually get your food. You sit back down and ask about their classes; they ask about yours, and the meal ends peacefully. If your night is free, you might ask them to come over for a movie or some video games, or to go see a concert at the coffee shop. Good friendships can be cemented over good food.

Noise: Dorms tend to be noisy places. Parties, radios, television, video games, and friends just hanging out tend to create quite a bit of noise pollution. But there are a few things you can do to prevent it bothering you:

• Study in the morning. If your classes don’t start until 10, use 7-10 to get some homework done. No one will be up to bother you and there will be few distractions.
• Study outside. Most colleges have a lawn and a forest patch somewhere on campus. Both will likely be quieter then your dorm on a weekend afternoon, and if you don’t need your computer, you can spend an entire day camped out under a tree.
• Request a quiet (“study”) dorm. Here you’ll tend to find all the other kids who hate noise and who need silence to study. Typically harsh punishments are meted out to those disturbing the peace in these zones, so you’re sure to get the quiet you need.
• Leave the dorm during sports events. No matter where you live, the dorm is going to be loud during the Superbowl or Stanley cup. Go to the library or downtown and skip the interruption entirely.
• Bring earplugs or noise-canceling headphones to wear to bed.
• Try asking nicely. Most people tend to be reasonable provided you’re polite. If at midnight you knock on a door and request they lower the music, they’re more likely to comply then if you bang on your wall at 7pm.
• Don’t let fear of noise prevent you from living in the dorm. Dorm life is a once in a lifetime experience you don’t want to pass up. Using the above techniques, you should be able to survive the noise of college. Moreover,you’ll need these skills for independent living later on, as most apartments will also have noise pollution issues.

These tips should cover the basics for living in a dorm. Any more questions? Ask away in the comments. Also, be sure to post new questions on the Ask an Aspie page (I’m out of ones to answer). Tomorrow, we shall return to regular autism blogging.

Ask an Aspie: Moving in

This is part 2 of a three part series on dorm life in college.Part 1: Choosing a dorm, can be found here.

Once your dorm is chosen, your roommate contacted, and your room sized, you have to actually begin to pack to move in. This should be done in a series of steps:

1. Measure your car. Determine exactly how many cardboard boxes it can accomodate. Acquire this many cardboard boxes and set them up in your living room.

2. Clothes: Clothes will vary by climate. Remember where you are going probably has vary different weather than where you are coming from. Email someone who lives there and ask about the weather. How many months will you need a winter coat? What about a fall/spring jacket? If you are not living in a Northern area, don’t waste space packing a comforter or winter coat. You can have it brought up at Thanksgiving. Pack a week’s worth of pants, shirts, socks, and underwear. Then when you get to college, but another two week’s worth of socks and underwear. Washing machines and dryers eat these like mad, and you can never have too many.Don’t pack hangers! They waste space and at 8/$1, you can afford to buy two sets when you get there. Also bring two sets of sheets. You never know what might spill on them in the middle of the night, and you don’t want to be waiting two hours for your only set to be fully laundered. If possible, bring new sets. They are much more compactly packed. Most college beds are twin XL, but be sure to check with your particular college ahead of time. If you must, bring pajamas. But note that most college guys wear an undershirt and either boxers or pajama pants to bed. A matching flannel set might not go over well.

3. Hygeine items: Bring 1 shampoo, 1 soap, a few washcloths, one toothbrush, one hairbrsh, and one thing of toothpaste (aka enough to get you through 2-3 days). The rest can be bought once you’re at college.Wait to buy detergent until you’re already there; you won’t need it until the end of the first week anyway.

4. Entertainment: You’ve already decided with your roommate who’s bringing the TV (unless you’re living alone, and then it’s you). Consider whether you will have time for video games. If you know you will be tempted and skip doing work to play the games, leave them home. I’ve seen far too many college lives ruined by World of Warcraft obsessions that prevented class attendance. Also think about how your video game habit might add to or inhibit your social life. If you only play 1-player games, you won’t have much cause to leave your room. If you own and play multi-players, you could become the must-invite kid to all the gamer parties. Rockband and similar games are a no-effort socialization technique. Use this to your advantage.

5. Odds and Ends: Fold-up hampers are very, very, very useful. Invest in one, and if you can find the space, buy two (one to hold dirty clothes, and one for the clean clothes you haven’t put away yet). Splurge and buy a nice one; you need it to last a whole year. Garbage cans are useful. You can buy one there.Key rings are a good idea. The louder your keys are when they fall, the more likely you are to notice. Ear plugs and eye covers area solid investment for sleeping. Things to lock up your stuff have been mentioned;  beyond a key for my door, I didn’t use any additional locking containers. They do make laptop locks which could be a good idea is you tend to leave your unattended when at the library or dining hall, but I never found one necessary. I’ve heard of colleges with safes in their room, but neither of mine did.

6. Meds: If you’re an Aspie, you’re most likely on meds. Anxiety, depression, OCD, sleeping problems, etc. are all very common among us. But there’s a secret: these problems are very common among all college students. Your psych meds will not be a big deal, so don’t worry about taking huge efforts to hide them, or needing to excuse yourself to take your meds before rejoining an outing. If you have meds that can be abused however (sleeping pills and ADHD meds immediately come to mind), do be sure to keep those out of sight when you have visitors, especially if your visitors are premeds.

7. Lists are quite useful.Make a list on each box detailing what’s inside, a list for yourself of what has been packed, what still needs packed, and whatshould be purchased once you get there. You’ll thank yourself later.

8. You will overpack. Don’t feel ashamed, everyone does. You will also forget something essential. Between walmart and fedex,it will cease to be a big deal.

Remember once you finish packing and moving in, it’s all uphill from there!

Ask an Aspie: The Pre-Dorm Situation

I realzied I had forgotten about this page and the fact that there were still some unanswered questions. I thought I’d pick up again with a question from Amazing_Grace1 who asked:

Do you have any dorm tips? What have you found that works in your room, how to get along with your roommates, how do you lock up your things (laptop, wallet, etc.), what you absolutely need to bring, how you decided on your dorm, etc.

I’m going to split this one into two posts, because the answer is rather long. This post will be devoted to things which occurred before I reached school, and then another post will cover actually living in the dorm.

Your living situation is one of the single most important contributing factors to your college success. Living in a loud smelly building with few windows won’t be conducive to studying and getting good grades. Unfortunately, most freshmen dorms fit that description.

I started my dorm search on the school’s website. I looked for the building with the most furniture in the room (which would suggest more physical space), and extra amenities like carpeting. Then I went to the facebok group for my school. I determined which dorm everyone seemed to hate, mostly because it was the kids least like me who were vocal in the group, and created a list based on dorm popularity. It turned out that the dorm with the biggest nicest rooms was a bit of a hike from campus, and surrounded by woods.  I had my dorm chosen.

Next, I joined the facebook group for that particular dorm. There I was able to determine who else would be living there (and send emails ahead of time to people who sounded interesting), and also get a layout of the room and the building. Thus I was able to determine which storage bins would fit and which would have to stay home.

Once my room was assigned, I sent an email to my roommate. We discussed who was bringing the fridge, television, microwave, coffeemaker, and printer, splitting the items so that each of us were bringing about $100 worth of shared goods.

I cannot stress enough the importance of the internet in these exchanges. I know that I am most coherent when writing, and I had the chance to make my best possible first impressions via email. For this reason, sending out emails and facebook messages to other kids living in my dorm was a god first step. Some of the kids emailed me back and we began exchanging emails, so that by the end of the summer, we were already quite familiar with each other. Then once we reached school, it was only a matter of finding the kids I had already “met” on the internet. I met one of my best friends now when she walked into the bookstore and said, “Hey, I think I know you from facebook.” I wouldn’t recommend overusing this tactic because it sounds stalkerish, but if you’ve been exchanging emails, it works quite nicely.

I’ll be posting part two in the next day or so.

Learning from Evangelists

I’m currently reading Righteous: Dispatches from the Evangelical Youth Movement by Lauren Sanders. The key point of the book is this: the evangelical youth movement has grown exponentially over the last ten years, and most of the conversions are taking place because of one to one conversations.

Why mention this here? Because we, as activists of a different sort, need to learn from those who are already suceeding. Autism awareness and understanding won’t be best served by posting fliers and giving interviews on television. Are they nice touches? Yes. But activities like those won’t change hearts and minds, because the people who pay attention to them are those who already have a connection to the topic.

The book talks of a notable strategy: strike up  a conversation with a stranger about a shared interest (their hair, their earrings, the slogan on their shirt, the bumpersticker on their car). In the midst of your discussion, find a way to mention salvation. Continue discussing your shared interest. Once you run out of things to say about it, wait for the other person to ask you about salvation. Seize the opportunity to make a convert.Now just substitute autism in for salvation, and you’re ready to go.

Where might this strategy work? On line at the store (particularly book stores, notorious for their long lines but ample material to connect over), on the side lines at a soccer game, waiting for your kid to get out of school or off the bus, over the internet in a chat room, etc.

But what about those individuals who you already know but who just don’t seem to get it. How do you get them to talk about it without seeming pushy and turning them off?

One option is to watch movies about the subject. Not documentaries, but movies with action and pizzaz and an incidental character with autism (Mercury Rising immediately comes to mind, but I’m sure you can think of others). Then when the autistic character does something entirely unrealistic, say something like, “Oh that’s a poor representation.” Then be quiet for the rest of the film. Once you reach the end, with any luck, your movie-watching partner will turn to you to ask about your comment. Seize the moment!

How big can we dream?

As most of you know by now, I work with two families in my college town, Charger and his parents, and the triplets and thir parents. One big difference I’ve seen between the two is the way they react to how I speak to their sons about the future.

When me, Charger, and his mom are driving by my college, I talk to him all about the school. I wax poetic about the computer department, and how he’ll learn all these different programming languages and make all these cool games. I tell him about how much he’ll love the dining hall that always has milk and pizza, but he’ll want to avoid the one better known for its juice. I explain the dorms to him, and inform him about how much he will not want to live in the freshman dorm, because it is simply too loud and has too many people. Yes, he’s only almost six. But in twelve years he might be going to the college I attend now.  I think its worthwhile to plant the seed in his head, get the thought going. Charger’s mom loves it, and she encourages me to tell him all about the wonderful things at the school.

At the triplets home, there is a far different atmosphere. One day after 45 minutes on the trampoline with Josh, I finally had to get off. As I picked him up to put him on my hip to carry him back into the house, I said, “Bud, you have a vestibular system of steel. The ladies are going to love you one day,because you can stay out on the dance floor all night. You could be Joshua  (last name), prom king  of  (town name) High.”  Once I had him all set up in front of the DVD player, his mom came over to me. “I’m really uncomfortable with the way you talk to him like that. It’s like you’re mocking him. He’ll probably never have a girl friend.”  I think that’s a hasty conclusion. Yes, he’s six and still wears a diaper and has only three signs. But who are we to put limits on what he can do with his life? So now I still offer the same praises, but in quieter tones  and when the mom isn’t in the room.

What’s your opinion? Do you talk to your children about life opportunities they might never have?