So Proud

Twenty Years ago, my mom got called into a large office where three “experts” sat to discuss her son, my brother. Carl was in kindergarten, was barely speaking, didn’t know his kindergarten basics like the alphabet and counting, and couldn’t draw a stick figure or cut a straight line. These “experts” told my mom that Carl, who has a diagnosis of autism, cerebral palsy, ADHD, and developmental dely, would never be a productive member of society.

They said that despite the years of OT, PT, and Speech that they would offer, he would never graduate high school, hold a job, drive a car, have a girlfriend, or live independently. They recommended looking into long term care facilities because the sooner you get on the waiting list for those places the better.

8 years ago, Carl took his first job washing tables at Burger King. Then he became the burger flipper, the cashier, and finally the head of drive-through. Tired of burgers, he switched to Taco Bell, where he improved his already near-fluent Spanish, and became the trainer of all new employees. Now he’s happily working at Walmart, and will soon be promoted to shift manager.He’s also pondering taking the Post-man Exam.

6 Years ago, Carl had his first girlfriend. She helped him improve his now fluent Spanish, teaching him words like “kiss” and “girlfriend”. They went to the movies and out to dinner and had a very giggly high school romance. Since then, he’s had two other ladyfriends, and is in pursuit of a fourth.

5 Years ago, Carl also graduated high school. He had a Regents diploma, and an 87 average. He graduated in the top 1/3 of his class.

4 Years Ago, Carl learned to drive a car. He learned in and then inherited my mom’s old Chevy Lumina, and when it finally gave out, he purchased, with his own money earned from several years of employment, a Ford Focus he picked out because it was good on gas and environment-friendly.

3 Years Ago, Carl got his Associates Degree from the State College.  After two years of hard work, he had defeated the odds and walked off so proud.

But today, June 30, 2009, Carl received his Bachelor of Arts in Business.  That’s right, my Alphabet-Soup brother has a BA to call his very own.

I wish we could track down those experts now. Show them how wrong they are, show them that nothing is impossible for Carl. Tell them that they have no right to deflate a mother’s dream for her child, because he will succeed against all odds.

Chores as Therapy

Theories on the role of chores can be divided into two categories: chores to teach responsibility (involve charts and names and usually some sort of reinforcement for completing the task) and chores to teach obedience (“Cale do this,” with a punisher for failing to complete the task). We were a chores for obedience family.

But they can serve a greater purpose then simply being a way to teach life lessons. Chores can also serve as a form of sensory integration therapy.

• For example, for years and years I could not stand the sound of the vacuum. I would run up the stairs and hide my head under a pillow rather than listen to the vacuum. But once my mom had me start vacuuming (first with headphones with music, then headphones with silence, then no headphones), I became accustomed to the noise. Improving on the situation was the fact that I was now in control of the noise. If I needed a break, I could turn the vacuum off for a few minutes; if I was tolerating it well I could vacuum an additional area of the house to avoid needing to do it later. The noise of the vacuum was now only being played on my terms, which helped me to adjust to the sound.

• Another example is meatloaf preparation. If you’ve been reading this blog for awhile, you know I have serious consistency issues. And meatloaf preparation involves the touching of sauce-covered cold ground beef. But I discovered after one encounter with the meatloaf, that I could prepare it way better than my mother. So slowly but surely I moved from ingredient fetcher to meatloaf preparer and the quality of the meatloaf improved while my aversion to it substantially decreased. I’ve now become quite fond of preparing meatloaf.

Chores can also be used to improve fine motor skills.

• Ever since I was young, I was the official mozzerella cheese cutter for chicken parmesan and lasagna. I will admit, my knife work isn’t pretty. I flunked cutting skills in kindergarten, and with good reason. But after 15 years of 3X a week cheese cutting, my slices could easily be confused with that of an experts (ok, not exactly, but still…).
• In a house with two boys who roughhouse, buttons never cling to clothes very long. A decade ago, my mom declared me the official button-sewer. Those tiny little needles with that very frayed thread made this task an intense challenge. But with plenty of practice I have prevailed.

So, as much as I hate having to stop whatever I’m doing, I’m also well aware that every guy’s crazy for a man who can cook and sew.

Special Siblings and the “Savior Syndrome”

It’s late afternoon and I’m in middle school. I’m camped out outside the school, a few yards over from the smokers, with a girl who will serve as my confidant for the next few weeks. She is the first person to whom I let the bottle cap burst, the first person who ever gets to hear the stories of my father’s alcoholism and drug abuse, of my brother’s disabilities, of my mom’s inability to hold it all together. She’s the first friend I cry in front of, the first to ever know that my life isn’t as wonderful as I try to make it appear. She listens to my stories with a knowing look in her eyes, nodding at all the right places, and releasing those sympathetic sounds I still haven’t quite learned to imitate. And then she says, “Cale, you know what your problem is? You have Savior Syndrome.”

For kids who grow up with an older sibling with special needs, “Savior Syndrome” is something we are infinitely familiar with. It’s also seen in kids who come from homes where drug abuse or alcoholism is a problem in either the parents or an older sibling.

Savior Syndrome is the notion that you have a responsibility to be absolutely perfect, to be the ideal glue that will hold your family together. It’s the idea that your parents are so busy attending to the “important issue” whether a disability or addiction, that you need to ensure they have no cause to worry about you. It necessitates straight A’s, a talent your parents can boast about, and plastered grinning smile. Having Savior Syndrome means never lashing out against your parents or sibling, never trying drugs or alcohol, never getting in trouble in school. If you slip up, the facade cracks, and the world can see the dysfunction that characterizes your family.

Savior Syndrome carries with it a great deal of stress, and a ton of self-blame. If there’s a fight in your family, you try to figure out how you messed up, even if there isn’t a remote connection between your actions and the argument. If you ever do miss up (get a B on an exam, be held for detention, talk back to your parents), there is the crashing weight of knowing you failed, and you did exactly what you shouldn’t have: you made your parents more stressed then they already were.

Savior Syndrome cannot last forever. Eventually, the fantasy is stripped away, and the truth is laid bare. There tends to be one of four results, and they usually occur during middle/high school:

1)Mental Illness, most likely depression or anxiety. All the stress of all those years builds and builds until it has nowhere to go but out. Self-injury is highly likely.

2) Suicide: You failed. You had one life’s purpose: to save your family and you just couldn’t do it. Why bother going on?

3) Alcoholism/Drug Abuse: You’re stressed. Life is just to hard to cope with on your own. You could use a little bit of help, and if Jack can get you through the night, who is anyone else to criticize. But you soon need more and more to get you through the day, and you become one of the addicted.

4) Delinquent Behavior: You spent your childhood being perfect. Never demanding extra attention, never giving anyone cause for alarm. And it didn’t work. It left you drained and your family was just as problematic as ever. Now you’ve spent enough time trying to be wonderful, it’s your turn to have some fun. That is, until you get caught and wind yourself up in juvie court.

The devastating effects of Savior Syndrome can be overcome, but the mindset will remain long after the symptoms of rebellion have passed. You’ll still suppress all the emotions you want to let out but know you shouldn’t. You’ll still think, “I need to be the responsible sibling; I need to be the one who gets it right.” Even knowing you can’t be your family’s salvation, you know you still have to try.

I think Savior Syndrome can’t be truly prevented; it’s a burden we bring upon ourselves. But the effects can be mitigated. Some things which might reduce the effect on your child: -

• Remind them they don’t need to be perfect, that you’ll love them just as much if they get straight B’s on their report card as Straight A’s.
• Let them know they can tell you when they are feeling frustrated or overwhelmed without having to fear backlash or punishment.
• Talk to them about their feeling that they need to be “the good son”. Let them know that you’re not putting that sort of pressure on them, and they shouldn’t put that sort of pressure on themselves.
• Watch for warning signs that your child is feeling overwhelmed. Remember that they have become experts at the art of suppression, and the signs will be subtle. If necessary, find a professional (counselor, therapist, psychologist, reverend) who your child can talk to in times of trouble.

Savior Syndrome comes with the territory of being a sibling of a child with special needs. But it doesn’t need to define your child, and it doesn’t need to destroy their lives. But as parents, it is your responsibility to intervene before it’s too late.

Exposing my own Biases

We pulled up next to a van with two bumperstickers on the back, both advertising for autism awareness. My first thought: I have to find that mom, and give her my card (business card with my name, adress, and qualifications as a special needs babysitter). We were at the food court, so the plan was simple.

I started at the back and kept my eyes peeled for any kids exhibiting spectrum traits. I stored away four boys for the recheck, boys who were waving their hands in front of their eyes, staring at the ceiling fan, or playing with Thomas the Tank Engine trains.

I heard the man before I saw him. Making the noise that sounds like it would almost be speech if the lips were moving in sync. Then I walked by. He was a bit older than Carl, maybe in his early 30’s, and a woman I presume was his mother was enjoying her lunch with him. I smiled at the two (because that seems the best response when caught peering a bit too closely), and kept walking on to grab my lunch.

My own assumptions had gotten the best of me, which I suppose is at least partially a sign of how “awareness media” is being very careful about the image it presented. Seeing the stickers, I assumed they belonged to a mother of a boy, probably between 4 and 8, who would be immediately obvious in a crowd of people emjoying their lunch.

I’d like to say that this experience was the last time I make a thought error like that, but I doubt it.

Socialization Stories: College

This is the final part of a series on socialization from elementary school through college.

The July following my senior year rolled around and Kelsey left early for school to try-out for cheerleading and band. Thus I had a full summer stretching free in front of me. The limitations of my chronic illness made working impossible (I was only awake and functional 4-5 hours of each day), so I was pretty much able to do as I chose.

The summer was thus spent in the company of Justin, a boy I had met in the gifted program in elementary school, and my lab partner for 3 years running. We learned Magic the Gathering together, and spent every day doing one of three activities: MTG, Nintendo-64, or experimenting with Justin’s liquor cabinet. It was a great summer. All misfits in school, we fit nicely in the company of one another.

But then the end of August arrived, and we flew out to our respective colleges, dotted across the landscape of Pennsylvania and upstate NY.

I was nervous arriving at school. I had met a few kids on the internet, but also made a few enemies. I knew nothing about my roommate as he had spent the summer in the rockies and thus never had time to answer emails.

Fortunately, on the second day of orientation, Emily came up to me in the bookstore and mentioned that we had met online. We got to talking (mostly about books, because we are both total  bookworms), and immediately hit it off. A few hours later, Mario got lost during Orientation and joined my group for introductions. Within 48 hours of arriving on campus, I had met the two students who would grow to become myt best friends.

As the year went on, my social life only got better. Mario started a Killer Bunnies (card game) group, and at point we had a dozen members attending the twice weekly meetings. I was walking into town with Emily each week, and we’d shop for books and old clothes at the thriftshops and swap stories aboiut our very different childhoods. I joined a Christian socialization group and met some kids that are still game for a shared dinner or quick conversation.The end of the year came much too fast, and I set up to live with Mario and Emily the following year, which was a great decision.

Sophomore year dawned, and I entered much more prepared. I assisted at Orientation and TA’d for a freshman class, giving me a chance to meet some of the new kids who were in search of friends. I met Kristen on Move-in day (read that story here), and found an Aspie in the freshman seminar who played MTG. I became friends with Emily’s roommate and another student who lived in my suite. I became involved in the Autistic swim, elementary socialization program, and working with Charger and babysitting the triplets. I also hit it off really well with a professor who shared my special interest.

Junior Year is now approaching, and promises to be more of a challenge then sophomore year. Emily will be abroad, Mario and I have drifted, and I will no longer be living with the same suite mates. But hopefully with a bit of effort on my part, I can make this year as fantastic as the last two.

Socialization Stories: High School

This is part three of a four-part  series on my socialization as I aged. Previous posts have covered the elementary and middle school years. Today, I delve into high school.

I was rebounding from the dark depression when I met Kelsey, who had begun to come to English extra-help, where I spent each week working on improving my “voice” in essays. She and I got to talking, and she invited me to sit with her at lunch the next day. Reluctantly, as I was finally reconnecting with Justin, I agreed. the next day at lunch she invited me to come back to her house after school, and how could I possibly say no? Somewhere in the coming days, a friendship began to bloom.

When Kelsey and I were first becoming friends, she liked to give me “advice.” “Cale,” she’d say, “Don’t you know no one else wears their bangs like that (or wears flannel anymore or carries a black backpack or reads Dostoevsky on a back bench after school)?” And since her advice made sense and was accurate (no one else did have my bangs or wore flannel), I tended to follow it.

But pretty soon she seemed to be making all of my decisions for me. I couldn’t go out to lunch without consulting her about the menu first. She accompanied me to the library to pick out my next round of books. She’d call me before we went out to the park or beach to let me know which outfit she thought I should wear (not that she liked anything I owned, but she’d settle). She scrutinized and controlled every aspect of my life.

We had good times together. We watched foreign language films, both subtitled and dubbed. We tried out every restaurant in town, including some with exorbitant prices. We swam in her pool and went to her family parties and had, from all appearances, a very normal and healthy teenage relationship.

But no one knew about everything that went on when she and I were alone together. The way she’d criticize my every flaw, no matter how minute. The way she’d call me every day at least four times to find out what I was doing or who I was with. The rages she would fly into if she found out I went to Justin’s house without asking her to come along. She was a strong fan of “hate declarations” which were times where you sat each other down to tell the other person everything you hated about them. Some of the recurring themes in her talks with me were:

• I hate the way you make weird sounds when I’m trying to tell you a story. (I never knew I did     this until she pointed it out to me, and have since made a conscious effort to stop).

• I hate the way you never look at me when I’m talking to you. I’m not off in the corner;I’m right     in front of your face.

• I hate the way you never seem to have the right expression on. Do you simply pay no attention     to me?

• I hate the way I could have every conversation I have with you with myself, and it would be  equally as unhelpful. Why do you never say anything interesting or provocative?

She had a collection of other hates, but these were the ones that stood out to me the most, because they gave me the feeling that I was somehow infra-human. Why didn’t I naturally respond the way she wanted me too? What made me so different from everyone else?

Kelsey also cried. A lot. And I never, not once, had the right response. Efforts at sympathy were dismissed. Distraction was responded to with rage. Apathy was harped upon at every possible opportunity afterward. I felt like a total social failure.

As a result, I believed Kelsey when she told me that she was the only one who would ever deign to be friends with me, that I had nothing to offer in a relationship, and I was lucky just to have her. That I would grow up, miserable and alone, displayed at a funeral no one would attend.

Fortunately, the end of senior year brought the promise of college. And college was an entirely different, entirely better experience then any that had come before it. But more on that tomorrow.

If this dynamic sounds uncomfortably familiar, check out this post for tips and resources.

Socializing Stories: Middle School

This post is the second part in a series on my socialization and friendships at various points in my life. The first post, covering grades 4-5 can be found here.

Middle School is difficult for every student. Kids from all the elementary schools in the district come together for the first time. Puberty begins for most students. Classes become more difficult, and the onset of switching classes begins.

But I tend to think the process goes at least a bit smoother for most students then it did for me. Middle School was my own private hell.

I entered middle school all but friendless. I had Justin, but he trying to make a name for himself, decided we couldn’t be seen together in public. The girls from elementary school were gone at their parent’s behest. Friends who had been children of my parent’s friends had either moved away or become unrecognizable thanks to puberty and the changes that accompany the middle school switch. Basically, I was alone.

In my academic classes, I concentrated hard on the subject material, putting all my effort into doing the best I possibly good. At eighth grade graduation, I took home the certificate for highest average in every academic subject except English. Everyone in those classes were friendly, but even I knew it was only so that I wouldn’t turn down a request to work together on a project.

In my non-academics (wood shop, gym, art, home ec.) the situation was very different. I was mixed with peers from all the academic tracks (no longer secluded in my advanced/accelerated bubble), mostly kids who didn’t know me from Adam, and who were far better at the activities then I could ever hope to be. I had one strategies for these classes: feign total ignorance of anything considered “hip” or “cool”. I knew far less about the latest bands or television shows or sports teams then any of these students, so there would have been little common ground for conversations. But I discovered by acting totally clueless (wait, who’s Michael Jordan again? He plays what sport), I could get people to talk to me, and not simply offer the polite smiles and cursory hellos I got in my academic classes. I was willing to totally humiliate myself just to get someone to pay some attention to me (specifically, I remember there was a kid who called me a cow everyday, and so I mooed at him). My theory there was similar to the newspaper theory: All press is good press. Whether I was being teased and demeaned or simply conversed with, I was happy.

This was also a time period when bullying really heated up. Four of my scientific calculators were stolen. Gum was placed in my hair. I became overly familiar with several lockers, the sand in the school yard, and the taste of my own blood. Afraid of jeopardizing the chance at the little peer attention I was able to secure, I lied to my mom to cover things up. She must have thought I was the clumsiest and least responsible kid on the planet.

Then ninth grade began. Non-academic classes came to a halt. Classes began to be tracked on our transcripts, so the pressure was up to excel. Additional kids were allowed into the advanced program, so I was mixed with individuals who had no notion of my reputation, and thus no reason to even pretend to be nice. I was coming to terms with the discovery of my sexuality, and was nervous about the possible consequences. I found there wasn’t a wall in the school building I wasn’t on intimate terms with.

I slipped into my first and most severe depression to date. I couldn’t sleep, refused to eat, and cried all the time. My grades started to slip, and that’s when my mom first came to realize my world wasn’t as perfect as I was telling her it was. I bottomed out mid-February when I feigned illness and refused to leave my room for a week. I simply stared at the ceiling and begged for death. Surviving that week started my turn around, and by mid-April I began to feel normal again.

And then Kelsey entered my life.
(to be continued tomorrow)

Socializing Stories: The beginning

I’ve been thinking about doing a series on this for awhile, and since I’ve gotten quite a few new readers lately, now seems like a pretty good time to get it going.

I’d like to go into a bit more detail about my social life in the four distinct stages of my life so far: Later elementary, middle school, high school, college. I’ll start today with Later Elementary.

The first conversations I have stored in memory (and thus the first available information I can get about what I was feeling) occured in fourth grade. Fourth grade, around here, is the time that kids stop hanging out with the children of their parent’s friends, and start hanging out with school friends, independently formed, and without direct parental supervision.

When 4th grade rolled around, I wasn’t in a particularly strong social situation. I was the only student in my grade at my school in the district’s gifted program. I was in and out of the hospital and specialist offices for asthma we couldn’t get under control, and I was on steroids for the asthma giving me a lovely moon-shaped face to accompany my ever-expanding waistline. I couldn’t hit a baseball, catch a football, or create a model airplane. I was at the bottom of the ever-confusing children’s social heirarchy.

Down at the bottom with me were two other kids:  Jeanine, who was a vegetarian because her hamster told her meat-eaters burned in hell, and Katrina, who pretended she was a dog.  When fourth grade began, I didn’t know any of these kids.

So, I spent most of my afternoons walking the playground. I’d collect bottle caps and pieces of string and all the other knick-knacks kids drop during play. I’d store them all in a giant hole in a tree which I covered in leaves. But one day, as I was walking to the tree to return a new bottlecap, I saw Katrina standing in front of it. As I walked up, she barked at me.

I was at a loss. What do you do when another student barks at you on the playground? I thought for a minute, and, unable to come up with a better solution, I barked back. This continued for a few minutes and finally she met me return the bottlecap. The next day at lunch, she introduced me to Jeanine, and the “Three Musketeers” was formed.

Now, instead of walking alone at lunch, I walked with these two girls. We discussed books, and television (particularly the shows we sat on the stairs to watch in reflection like South Park), but mostly we talked about social class.

We decided, (or rather, I decided and they followed along, as they were prone to), that the reason no one hing out with us was because they knew we were too good for them. Too smart, too mature, too everything they weren’t. We discarded the negatives (we were less hygenic, socially clueless, and incompetent at sports), and focused only on the things that made us, in our opinions, far better people then those who were glued to the social heirarchy, always fighting to move up one rung on the ladder.Then after school, we’d go back to one of our hoses and play monopoly or scrabble, always competing to see who could show off the strongest vocabulary. Life was good.

But sixth grade rolled around and with sixth grade comes puberty discussions, nervous moms, and the end of boy-girl child friendships.  Thus began a new friendless era in my life, one which I shall share tomorrow.

Ask an Aspie: Pica

I have a new Ask an Aspie post! Fayezie asked:

Pica!?! anyone!?! is there a magical answer to pica? my daughter is compulsive about getting anything small and malleable into her mouth…. dirt, paper… yum…. nothing has really posed a harmful risk to her, well I worry about parasites when she’s eating dirt/woodchips/pinestraw/leaves…. but I guess when I look at the big picture it is more of an annoyance to me, mom, cause she goes to my magazine pile and rips them apart to eat, or she picks at wicker baskets around the house…. (that can be a danger because little wooden splinters could pierce her esophagus)….

Pica is still an issue here at my house. Carl has eaten a good percentage of his baseball card collection, any stray rappers he finds around the house, the velcro off of both our watches. He really likes to chew.

Mom started with gum, but he’d swallow it. Then mints but he’d chew them and then swallow them. Neither were more than a 30 second solution. We tried directing his attention to the fact that he was eating things (it seemed to be almost a subconcious act). He’d note the fact and throw whatever was in his mouth out, but a minute later he’d have something new up there.

One solution that has sort of worked is frozen washcloths, which I wrote about here. Dip a washcloth in salt water and freeze it. It then provides a new tactile sensation and a taste. This has been quite effective in reducing his chewing habits at home, though it cannot be used outside of the home (afterall, he’s 25). Plus I imagine with small children it can be easily lost or dirtied.

Anyone else have a possible solution? Something more portable or even more effective? Please leave your opinions in the comment section.

For more information and a possible solution, I encourage you to visit the Sneathen Family site, where Michelle discussed her son Daniel’s use of “rubber chewies“.

Time-Check

It’s Sunday night. I knock and enter Carl’s room:

• Hey Carl, let’s have lunch tomorrow at 12:30.
• No.
• No to lunch or no to 12:30?
• (Exhausted sigh). I don’t get home from school until 11:57. I take 2 minutes to get from the door to my PS3. I have to play for exactly 30 minutes. Then it takes me 2 minutes to get from the PS3 to the door. We couldn’t possibly leave until at least 12:31. And what if I have to use the bathroom? So perhaps 12:33.
• Carl, 12:30 or 12:33, what’s the difference?
• 180 seconds.

Carl likes time. He cleans his room from 2:19 to 2:39 exactly. He showers from 6:03 to 6:08 (yes, I have heard he is quite malodorous). He goes to bed at 1:11 AM. It was a behavior that started around when he graduated high school, and has continued since.

I will admit, I do plan out my showers to the minute. But for me, I don’t mind adjusting my plans by as much as fifteen minutes. But for Carl, every second counts.

I imagine for him it is a way of organizing the world in a way that has always been unpredictable to him. Friends he would schedule a week in advance would call 1/2 an hour before they were set to come over to let him know they found someone better to hang with (not that they ever said it in those words). For my deadbeat dad, scheduling a day to hang is a sure way to guarantee he won’t be free on that day. So he’s learned he cannot depend on people. But he can depend on time.

So if he wants to go out to eat at 12:33 instead of 12:30, I suppose I can oblige (especially if he pays ).