Saturday, June 29, 2013

I Hate Change & Love Schedules. The World Doesn't.

I dearly love schedules and routines. The rhythms are grounding and they anchor me a bit to this 'time' thing that everyone else seems to understand. When schedules get altered or routines get interrupted, I get confused and lost, and it takes far too much effort to find my place. I've walked out of more than one shower without rinsing my hair because traveling changed my morning.

When I was a child they insisted that allowing us our routines was somehow bad--and yet they talk about how establishing routines for things like bedtime is a good thing. This doesn't make sense for me, though I think the thinking behind the former was "you can't run on routines when you grow up".

Running on routines is exactly what I do. I have a set morning routine, a set bed routine, and several interchangeable day routines depending on what is going on that day. The week has the same rhythm. If the week doesn't have the same rhythm I get extremely tired and cranky. Sleep 15 hours at a stretch tired. It's not a good thing.

Since there are times I know my schedule is going to change, I can work with that. I write up my weekly schedule & post it on my wall 3 weeks before the change actually happens,right next to the current schedule. When it's possible to ease into it, even using a placeholder activity in place of usual down time, I do that. If I can make the same active hours in the transition, I can transition the activities more easily than trying to do it all cold. Downscaling is harder, but it's also ok to sleep for 15 hours when my schedule drops off, or I can fill time with things like "taking the cat for a walk" (no, really). It's also much harder to forget what happens in a day if I've been looking at it for weeks.

If I need to change a part of my daily routine, like my morning routine, it's a bit more difficult. I actually do have about 5 morning routines worked out now, but it took many years. If I need to do a new one, I write everything out and follow it step by step. Again, I start using the new one before I need to, even if it's for a short term situation. Especially for a short term situation, since if I'm traveling I need to be 'on' the whole time and will also be dealing with a bit of jet lag or con crud. It's still a bit jarring, but at least there's no "what comes after shampoo?" confusion.

I also really hate environmental change. Loathe. Despise. I hate moving and I hate when everything in the room moves and I hate when the grocery store changes where things are.

Unlike with schedules, I have absolutely zero control over most of these things! I almost never change my environment, except adding or subtracting a thing or 2 very gradually, but sometimes I'll go into work and everything will be wrong and my boss forgot to warn me and I start hyperventilating because it all changed! NOOOOO!

It's not reasonable for me to demand the inventory people at the store move things back in violation of their job, nor can I demand that work be put back how it belongs-and often, objectively, it's a better set up. I can, however, reset my mind so I can function.

I do that by going outside and taking a lap around the building. Or walking to get a snack. Something that takes long enough that I can calm down, slow my breathing, acclimate, but not so long that my old internal map of the place totally overrides the mind snapshot of the new layout. I'll still feel off for the first while, but it's better.

Soooo yeah. I hate changes and love schedules.

Thursday, June 27, 2013

Those Pesky "Life Skills" That Everyone Keeps Talking About

I have a confession to make.

I couldn't shower myself until I was sixteen.

I wasn't completely independent with teeth-brushing until I was somewhere around fourteen.

I never did my own laundry until I had to, my first weekend being away at college.

I never cut cheese off a brick until last summer, when I was twenty.

I was never taught "life skills".  Because I am not intellectually disabled or "severely" autistic (in fact, my disability is cerebral palsy; though I do consider myself neurodiverse and there are some lesser known effects of the CP brain damage that mimic effects of autism), I was not in "life skills" classes in school.  In fact, I was in advanced and AP classes, and all the special ed staff at my school waved off my difficulties with a "Cara's so smart - she'll do fine!" It seemed like every IEP meeting always dissolved into everyone praising my intelligence.

Why is lower intelligence always associated with difficulty with life skills?  On the flip side, why is intelligence considered a trump card over all other difficulties?

I often feel younger than my peers precisely for this reason.  Most twenty one year olds know how to cook without using a microwave.  They can drive, even if they choose not to.  They have normal summer jobs like working retail or being a supermarket cashier.  Looking at others my age, I feel embarrassed, and so very, very young.

No one ever taught me how to do basic life skills.  I think it was assumed that because I was "so smart", I would automatically know how to do these things, like all the non-disabled children out there.  No one ever took into account that my physical difficulties would mean doing these things differently.  No one attempted to try to adapt these things - not even the physical and occupational therapists that pulled me out of classes three times a week.

It was my mother, bless her heart, that started to realize around the time I became a teenager that if I was ever going to go to college and become an independent adult, I would have to learn how to do things.  She put her wonderful, creative, research-oriented mind that I inherited from her to work and found out about adaptive nail clippers, shower chairs, long handled hair scrubbers.  She pushed me to learn to do things on my own, some with adaptive equipment, some without.

She filled in the blanks that the school left out. But she shouldn't have had to, and not everyone has that family support.  Life skills training should be a part of every school curriculum for students with disabilities - no matter how "smart" they may seem.  I am tired of the oxymoron that shouldn't exist.  Intelligence and life skills are not - and should not - be mutually exclusive.

Cara Liebowitz - a.k.a Spaz Girl

Lost, Mistimed, and Melty.

This just happened, so it is a quick vignette which I wanted to put here as I believe it will fit in to the theme perfectly.

There are difficulties and sometimes they are very difficult. I actually do talk about them on tinygracenotes fairly often but since it is in the context of relating to what someone else is asking, perhaps that does not stand out the way it needs to. In this blog, we want to have our stories show that things are sometimes difficult and sometimes very difficult, and yet we live lives.

Yesterday.  No, the day before yesterday.

It had been a day of difficulties at the airport.  The flight changed gates three times (gratitude shout-out to the airline professionals who walked me through all this!) and they said they were sorry it was an hour late.  In the second leg of the flight, someone sat in the middle seat and kept touching me softly even though I was scunching into the windowwall so hard my muscles were crampling into shaky things. At least they didn't have time to randomly change any more stuff.

I arrived at the hotel at a little after six.  My watch, which I look at a lot, but not always helpfully, has alarms and special markers.  I have time agnosia.  The conference was starting at six and the ending of when you could register was at seven, something like that.  I checked into the room (where also others would join me, but I felt kind of responsible for them, so I couldn't flee straight there to make up the time without checking in).

That was a good thing, because the conference area was very far away from the area where you sleep, which took me a long time to find even though the lovely registration fellow deliberately gave me a room that is easy to find.  Not sure if getting lost all the time is a Thing, but I have that too.

It took me even longer to find the conference area, despite the signage.  I do not know how long, because my impression of time passing by is not accurate.  But it was long enough that I was aware it was possible I would miss out on conference registration.  I was getting very stressed out, panic alert.

Finally, I found the right place.  There were some signs on the various rooms for the conference, Society for Disability Studies, but it was like a ghost town.  Had I really been that late?  I walked around trying to find the room people were in for the reception.

Also, I melted down.


Couldn't find anyone.

Then I think I started walking around saying "Help? Help?" rather quietly and probably forlornly, not knowing what else to do.

The manager of the conference space, a very kind man, found me, and somehow worked out that I was here for the disabilities conference rather than the business conference he was also orchestrating.  He took me into his office and showed me that he was making more signs.

With great kindness and delicacy, he let me know the conference didn't begin that day, but the following day.

My calendar reading skills, just as lacking in excellence as my clock reading skills (coupled with my intense anxiety knowing precisely how liable I am to miss things or hurt people's feelings because of these problems) had apparently gotten me there a day early.

Great thanks to the kind facilities manager, who did not make me feel more foolish than I made my own self feel.  However, I was not able to articulate my great thanks very articulately, of course, having only just then become unmolten.  I think I said, "You are very good."  But he understood, and seemed pleased, and I made my way back to the sleeping part of the hotel (getting lost a bit, as I do).

After having finally managed back to my room I melted down again thinking about it.  I am a professor at a conference and if your child is Autistic you may be able to imagine this scenario with some accuracy, because I am like your child.

Here is the next part:

My beloved Layenie popped up in chat on the computer.  I miss her very much when we are apart.  She read my typing about this horrendous story and concluded that even though it was by accident, it was clever to get to the conference early because now I knew where the action was going to be and I no longer had to worry about that.  I could spend the morning doing what I liked instead of stressing out. She was right. The next day which I think was yesterday turned out much better and a lot of fun.

We do have impairments, and when we say we also have strengths and are happy to be ourselves and live our lives we do not mean to say that isn't so.  But I have to say for me, having unconditional love and support sure does make it easier to "deal with issues" that may come up, such as repeated gate-changing panic, not knowing what day it even is, and melting down in public.  Argh.

Thanks for listening,
Ib (aka tinygracenotes)

Tuesday, June 25, 2013

So what is this?

This is a group blog of adult autistics (and the occasional allistic disabled person) who are a definitio
n of successful that means 'comfortable in our own skins, having lives that we find fulfilling'. We are undeniably autistic, we have difficulties, and we are unafraid to talk about our difficulties-and the creative problem solving we use to work with them. Our messages here are that it is ok to be disabled, it is ok to be disabled and like yourself, and that the stories of ubersuccessful highly privileged autistic folks who had every advantage are not the only stories out there.

Some names may be familiar to you from other blogs. Some may not. Our stories are those of disabled people who don't see "disabled person" as an oxymoron and who truly live "different, not less". We are advocates or activists, we like ourselves, and we bring to you stories of life while disabled that are neither sugar coated nor dripping in tragedy.

We are like your child. Your child is like us. And we may have difficulties, we are disabled--but there is no denying that we are also awesome.