Wednesday, November 15, 2006

Learning from our own mistakes

Ah the story of my life.

It’s been fun watching the kids blossom and grow. One of the things I am happy about is that they will be able to benefit from my illness. I can teach them the things I learned the hard way. I still remember like it was yesterday.

I was all dressed up in my white holy communion dress. 7 years old thin blond hair, white dress, veil, anklets, white shoes. heck I looked like an angel. I was pretty and I knew it. It was sunny that May and as my mom walked me up to church, someone told me how pretty I looked. I beamed, “I know” I said.

You guessed it. That was the wrong thing to say. Apparently you are supposed to thank people for overstating the obvious. What! and if he said, "you are a girl", should I thank him too. I didn’t get it. OK So I socked that away, I am a quick study. sometimes.

Fast forward 2 years or so. It’s Girl scout cookie time. I had to go out and sell these things. I was a wreck because, I don’t much care for big people, even now, especially if they are gruff and loud, like our neighbor was. Well he bought a couple boxes and everything was fine, I think. Then I found out, I am supposed to thank him. For What? All he did was put his name on the paper. Later, he gets cookies and the Girl Scouts gets money. I don’t get anything and certainly not now. So what do I thank him for? To get my mom off my back.

I remembered all this a while back, when I was telling my youngest for the umpteenth time that I loved her. She just cocked her head at me and said. Mom you already said that, as if once was enough and anymore was just redundant. I thought it was cute actually, she’s only 8 and quite a tomboy right now.

Well now she has discovered reciprocity. In an other kid this could be just another unwelcome phase, but in my aspie it’s a milestone. One evening, she hugged me three times and crawled up into my lap telling me how cuddly my lap was. I teased her and said, do you mean that or do you just want to stay up longer. She giggled and said both.

This is the child who we used to call a head with eyes. She never smiled. She wouldn’t let us hug her tightly or kiss her. She’d say goodbye if prompted and of course the above redundancy comment. She would go hours without talking and days without laughing. I’ll allow myself to be manipulated for that laugh of hers. Heck she might even get another pack of Pokemon cards out of me


Thursday, October 26, 2006

What's in a Name?

I guess I should finally explain the name of this site shouldn’t I? It’s not really cryptic, but yet it is.. Whooaaa too close to Halloween for that it is.

It’s really simple. When I was registering the domain for my web site Bouncing off the Wall. I toyed with lots of different names. Then I looked down and was reminded that the shirt I was wearing that day, had a Tigger on it. Yea so what else is new. But this particular one also said bouncing off the walls. And the rest is history as they say.

When I designed this page, I was wearing my “It’s a stimmy day” shirt. For those of you who don’t know, “Stimming” is what autistics and a lot of you other Neuro typical people, do for comfort when things get a tad stressful.

Some of us flap, some rock back and forth, some spin. Some even bite their nails. Now just how many of you took your hands out of your mouth or hid them? And how many of you moms stopped rocking back and forth?. Just kidding. I’m sure stimming got that name from the word stimulation. I know I have sensory stimulation problems and when things overwhelm my senses, I feel uncomfortable. One therapy for sensory stimulation problems is to either remove the sensory input or counter it. Some with certain tactile stimulation problems benefit from being tightly hugged, some with auditory stimulation problems will hum to overcome the barrage of other noises. How many of you have had a bratty little brother put his hands over his ears and sing “la la la, I can’t hear you” to drown you out See we’re all around you. wha ha ha JK.

Anyway. That’s the story. It’s probably Good, I didn’t have my Elmo Rules Shirt on that day Huh?



Tuesday, October 10, 2006

It's a fine Line

I just want to share part of a poem I found the other day. It is by Elaine Popovich and was on a site dealing with language and the disabled. I think more of the other person’s book dealt with political correctness and such, but that’s not what struck me about this poem. It is about how the words change depending on who you are talking about and what you know about them. well just read this part first.

You and I
By Elaine Popovich

I am a resident. You reside.

I am admitted. You move in.

I am aggressive. You are assertive.

I have behavior problems. You are rude.

I am noncompliant. You don’t like being told what to do.

When I ask you out for dinner, it is an outing. When you ask someone out, it is a date.

I made mistakes during my check-writing program. Some day I might get a bank account. You forgot to record some withdrawals from your account. The bank called to remind you.

I wanted to talk with the nice-looking person behind us at the grocery store. I was told that it is inappropriate to talk to strangers. You met your spouse in the produce department. Neither of you could find the bean sprouts.

I celebrated my birthday yesterday with five other residents and two staff members. I hope my family sends a card. Your family threw you a surprise party. Your brother couldn’t make it from out of state. It sounded wonderful!

My case manager sends a report every month to my guardian. It says everything I did wrong and some things I did right. You are still mad at your sister for calling your Mom after you got that speeding ticket.

I am learning household skills. You hate housework.

I am learning leisure skills. Your shirt says you are a “Couch Potato.”

After I do my budget program tonight, I might get to go to McDonald’s if I have enough money. You were glad that the new French restaurant took your charge card.

My case manager, psychologist, R. N., occupational and physical therapist, nutritionist and house staff set goals for me for the next year. You haven’t decided what you want out of life.

Someday I will be discharged . . . maybe. You will move onward and upward.

Now what gets me is that if the first person had never been diagnosed and sent for treatment, then the words ascribed to the second person, would be also used to describe her. I know you might think but wait, she must have been really sick or messed up in the first place, but that’s not necessarily so.

Consider 2 points. Some of you will remember the presidential race when Tom Eagleton of Missouri was Mc Govern’s running mate for a time. Now I am not going to get into a debate over who was better or any of that stuff, but if you can remember , when Eagleton admitted to having been treated for depression, he was suddenly totally unfit and was dropped from the ticket. So we were worse off with some one treated rather than someone who wouldn’t seek treatment?

Case 2. Two couples go over seas to adopt. The first couple admits to being recovering alcoholics and sober for 12 years. They are rejected as prospective parents. Couple #2 has never undergone treatment for alcoholism, but regularly get toasted with the family all of whom regularly get toasted, if you get my drift. They just don’t mention it, and come home with a baby. So in this case, Couple #2 would come home and have a celebration and get loaded while couple #1 would “fall off the wagon”

How many times can someone with any disability or mental condition have a “normal” reaction to everyday life, and the so called “normal” people use “sick” terms to describe it.

Am I just angry, or am I manic. Am I frustrated or am I “having a meltdown”

Where is that line. and who gets to draw it

Oooh I hate it when I get this serious this early in the morning. Time for my coco puffs



Open Letter to the Workplace

This was written by a friend of mine. read it it’s good, Tigg

by Jane Meyerding

This is a strange era in the history of autism because, for the first time, many autistics are discovering their own autism as adults. From the early 1940s, when autism first became a named condition, until the mid 1990s, only children were diagnosed. And those diagnosed tended to be the children with the most incapacitating manifestations of autism. Most of today’s adult-diagnosed autistics survived childhoods full of pain. They were labeled stupid, retarded, crazy, or simply “bad.” School was a torture chamber of teasing, bullying, and often physical violence. When help was sought from adults, the undiagnosed autistics were told to stand up for themselves, change their own behavior in order to fit in, and stop being a tattle-tale. Just “act normal,” act like the other kids, and they’d be fine. Unfortunately, very few young autistics are able to put that advice into practice. Being neurologically normal makes it hard for a person to understand what it is like to be otherwise. Most seeing people assume they can imagine what it would be like to be blind. But how many can imagine what it would be like to lack the “vision” that enables them to perceive and interpret non-verbal communication? According to Dane Archer, a professor at the University of California at Santa Cruz, nonverbal communication
includes facial expressions, tones of voice, gestures, eye contact, spatial arrangements, patterns of touch, expressive movement, cultural differences, and other “nonverbal” acts. Research suggests that nonverbal communication is more important in understanding human behavior than words alone–the nonverbal “channels” seem to be more powerful than what people say. []
Autistics, limited by their neurology to “what people say,” are “out of the loop” in almost every situation where non-autistic humans are chatting, negotiating, competing, or net-working, all the while using and interpreting the full range of nonverbal communication without even noticing it. The skills are so basic to their neurology as to be invisible to their conscious minds. Meanwhile, the autistic in the room is struggling to keep up, using whatever interpretive skills he or she has acquired through hard work over the course of years. And “work” is the operative word. Having to do on purpose what everyone else does automatically requires a lot of energy. It is like working two jobs at once, especially given that nonverbal communication is expected to go both ways. Non-autistics automatically interpret whatever nonverbal signals they believe they are receiving from other people. If the other person happens to be autistic, s/he must generate those signals consciously or risk being misinterpreted, sometimes in quite drastic ways. A job interview, for example, is stressful for most people. Now imagine what it’s like for someone with decades of painful experience in “getting it wrong” as far as nonverbal communication goes. Strong eye-contact is seen as a sign of honesty; failure to engage in that aspect of nonverbal communication is taken as a sure sign that the person has something to hide. That stereotype “works” because neurologically typical people in U.S. majoritarian culture grow up including eye-contact in their repertoire of taken-for-granted communication habits. For most autistics, eye contact is worse than not automatic; it can be painful or, at best, so distracting that one is unable to take in what is being said. The sad choice becomes: Do I look the interviewer in the eye and fail to understand the question s/he is asking me? or do I obey my neurology, look past the interviewer, and thus become able to respond in a way that illustrates how well-suited I am for this position, simultaneously branding myself “shifty” and “unreliable”?

Without a diagnosis, all such dilemmas remain personal and all failures to “fit in” and “make the grade” are considered proof of individual flaws. Diagnosis can be a huge relief, because it explains so much of what has happened (and failed to happen) over the years. An explanation is not an excuse, and few autistics would use their autism as an alibi for bad behavior. On the other hand, many of us are coming to see ourselves as part of what might be called a neurological minority group composed of those diagnosed “some kind of autistic” (including the controversial Asperger’s Syndrome). “Rather than conceiving of autism as a deficiency,” writes Professor Simon Baron-Cohen (Cambridge), “autism might be better characterised as a different cognitive style.” An intriguing idea, but one that should be matched with this quotation from Yale’s Professor Fred Volkmar: “Many troubled with Asperger’s are really quite bright, especially in terms of their verbal skills…. What is harder for people to appreciate is how impaired they are in other areas.” Just because autism isn’t “awful” and “tragic” doesn’t mean it’s negligible or non-handicapping.

Many of the nicest neuro-typical people “deal with” difference by proclaiming that it doesn’t exist. Or, if that doesn’t work, they will claim that it “doesn’t matter.” Their generous natures cause them to feel that “You’re just like me” is about the nicest thing they can say to someone who, for whatever reason, actually isn’t. While I admire the good intentions behind this kind of generosity, I can’t help squirming at the way it allows so many assumptions to go unchallenged. Unchallenged assumptions have a way of riding roughshod over those who don’t match up to them. Misunderstandings go unnoticed; expectations that are not met (because of the differences hidden behind “universalizing” assumptions) cause unfair conclusions to be drawn — and hiding those conclusions behind politely repressed disappointment does not clarify matters one whit. Most of all, we lose, again and again, the opportunity to experience what it would be like to acknowledge differences and allow them to be visible among us. I suspect that counting on “we’re all alike” as our main tool for getting along together also makes us less open to those whose differences cannot be “overlooked.” Rather than be “nice,” it might be better (in terms of ethics, though perhaps not easier) for us to stop making “sameness” part of our value system for humans.

As an adult-diagnosed autistic, as an autistic with a unique constellation of abilities and deficits, some of them autism-related, many not, I happen to be able — to have learned how to be able — to “pass” in many situations. I am not altogether happy about the fact that “passing” has become what is comfortable (though tiring) for me when I am in public, but it may be too late for me to effect radical changes in my coping mechanisms at this point. (I am 55 years old, after all.) What I want most for my fellow autistics, and especially for those “coming up,” for the younger ones, is for them to find a world and a workplace where they will not have to “pass” as other than they are. Getting to that new reality will require a lot of hard advocacy work on the part of autistics and their friends. Mostly, however, the change will depend on non-autistics being willing to accept and live with difference rather than forcing it underground by denying its reality or isolating it in “special” areas as something to be tolerated but not engaged. The difference between autistics and non-autistics can feel cultural; hence Temple Grandin’s description of herself (made famous by neurologist/writer Oliver Sacks) as “an anthropologist on Mars.” What autistics, whether we can “pass” or not, are asking for is that other people leave room for us. Us as we are. Even if we “look autistic” or “act autistic” or use alternate means of communication. Don’t require that we look and sound like you, because some of us can’t. Don’t judge us on the job (or during the job interview) according to how well we perform the social dance. Give us a chance to show what we can do when who we are is allowed to help shape the world we share with you.

Thursday, September 28, 2006

It really is Real

When People think of Autism, they thing of kids staring off into space, maybe with a football helmet on to protect them as they spin around on the floor or bang their heads on the wall. Or they thing of “Rainman”, a movie with Dustin Hoffman and Tom Cruise. Raymond (Rainman) was the older brother who was sent to an institution when it was feared he might hurt his baby brother. Raymond was exceptionally good at math, but had poor social skills, had rigid routines, swayed back and forth and had a flat tone of voice. Raymond was somewhere along the Autism spectrum which ranges from severely affected, to very high functioning. A high functioning autistic who might have Aspergers, may look just like anyone else, or might have a peculiar gate, but even though his disability isn’t as visible, trust me it is just as challenging and oh so evident in the lives of many of us, just as diabetes or asthma is to others.

I was once told, that autistics live in their own world but those with Aspergers live in the world, just in our own way.

I was also told once by a social worker at my kids’ last school, that Aspergers was rare. There was no arguing with this person, who reminded me every other sentence that she was the mental health professional. (My doctor thought this was extremely funny). This “mental health professional” needs to go back to school. One in every 166 kids is autistic. There are 4 in my family. That doesn’t sound very rare to me.

There have been many theories about the cause of Autism and Aspergers and suggested reasons for the rapid increase that we are seeing now. NBC even did a story about the Autism epidemic, which I tried to tell the “mental health professional” but she wasn’t listening. Some have blamed the preservative in childhood vaccinations. Some say it is genetic. Others say that, since the increase in technology jobs, people who are not good with dealing with other people socially can thrive at a job on a computer. Also it is now very possible that an Aspergers male may meet a like minded Aspergers girl in the next cubical, marry and have more possible Aspergers kids.

So is the world now doomed to having a bunch of us Aspies running around? It could be worse. The people that are diagnosed by the public as having an awful lot of Aspergers like traits would amaze you. The one I always like to mention is Bill Gates. Now while I like to Hate Billy boy, especially when my computer is acting up, think of where we would be if he didn’t think out of the box the way he did. Watch the pirates of Silicon Valley sometime. You might hate him more but you will come to see the method behind the guy.

My biggest problem with Aspergers isn’t the condition itself but getting the world to realize that it exists and that it is real. I was once accused by that same “mental health professional” of making up the kids’ diagnosis. Her words were .”Do they have a formal diagnosis?” Emphasis on the word formal. This was in response to some special things I had asked for to help them adjust to a new environment. I so badly wanted to say. No lady, I just read Readers Digest and this is the disease of the month. Geez.

Personally, I wouldn’t want my kids any other way. They are cute and adorable and really hate it when they do something wrong. If I can get the rest of the world to just lighten up and just listen to them, they would enjoy them as much as I do

Chicago, Chicago

Returned from Robin’s to find the city ravaged by a freak storm. I love storms, but this one had 90 mile an hour winds and much of the area is still without power. A nice side effect is that Mike got to stay home today. There is no power at his place of employment either. Made it much easier to catch up on my sleep.

Visiting my daughter is always  great. When we visit her, I get to spend more time talking with her like we used to and I thoroughly enjoy that, but I always leave feeling like I disappoint her. This is just dumb, because she says I don't. 

During part of her Lamaze class, which was why I was there, her instructor excused a portion of the film that was objectionable to most of the new moms, as being made on the west coast. Robin took exception to this under her breath because she considers herself a Californian! The cold winters in Chicago were quite a change.

We had talked earlier about her teenage years and her older brother’s too. I said that I was always worried that they would bring friends home and they would think we were the wrong class. She did ask what I meant, and I replied, that I was afraid they wouldn’t think we were in the same class level as they were. Certainly not as high class or rich as her in laws were. Her in laws of course felt quite at home when they visited. That made me feel better.  It reminded me of the 20th high school reunion we went to.  All the stuck up kids were really friendly. One of the kids who got teased the most was practically a millionaire.  Sometimes being smart has it's perks.

That's the problem with Aspergers. As a child my self esteem was very low, which is why I guess, I felt I wasn't good enough for the kids' friends and new family. My dad was a perfectionist ( I suspect he had Aspergers a bit too now). When I talked nonstop especially about something we learned at school, I was accused of being book smart and life dumb. I hated that, but perhaps some of it is or was true. Not understanding the nuances of social interactions, I probably did appear to be a bit backwards. I remember once being told I was pretty. Boy did I  get trouble for responding. "I know".

No one knew about Aspergers then of course and mostly I got told to not talk so much or so fast. Competing with all brothers in a male dominated family was rough. I had important things to say and dang it why didn't they listen? So I read a lot, like now and taught myself much of what I know. I am a sponge that way.  Go ahead ask me anything.  I'm liable to ask you how much time you have. :-)