Taking the Scenic Route

Two sick kids today. The one with the 103 fever is acting like she doesn’t feel so bad, the one with no discernible fever is coughing and grumpy. Doesn’t appear to be anything serious, just “normal” sick.

After spending the afternoon helping out at a funeral, I was ready for a change of pace. Zora’s friend was having a birthday party at Pump it Up, which is just an awesome place for a party. I met up with some other parents I knew as we watched the kids. It was so much fun to be able to stand around and chat.

Zora and some of her friends at the end of the party. (taken by another mom…I forgot my camera)

There is a battle going on in the Autism Blogosphere. Initially, today was supposed to be a “Communications Shutdown for Autism“. This didn’t set well with me, but I couldn’t really verbalize why at first. Maybe because social networks and online forums are where I learned to know several Autistic adults, and where I first began to find my own voice of advocacy. The online world is where I learned not to live in fear, and that an Autism diagnosis was not the end of the world. It is also, ironically, where I found support and companionship during the years that Autism was the most isolating because going out in public was so stressful and exhausting for everybody in our family. Online is where Autistics have the easiest time communicating, and that I believe to be the crux of why it seemed so wrong.

On this day, I wanted to post some links, from Autistic authors.

First, on why I won’t participate on “Communication Shut Down Day” on Facebook and other social Media.

And now, some exerts from Autistic authors:

25 Things I Know as an Autistic Person

by Corina Becker

1. I know that when I step outside my door each day, I enter a world that doesn’t understand me. To me the world is a wondrous, confusing place that I must work hard to navigate. I often wonder how everyone else can stand to handle existence.

2. I know that if people really want to understand Autism, they should be listening to Autistic people. We are the experts of Autistic experience. Ignoring us won’t make us go away.

3. I know that I do not suffer from Autism. I suffer from a lack of understanding and support.

4. I know that being “high functioning” does not mean not being disabled. It means that my disabilities are invisible.

5. I know that having a disability does not mean inability.

6. I know that Autism isn’t what you think. I dare you to think differently.

7. I know that after the whirlwind of childhood, and the emotional minefield of adolescence, I emerged as an adult — still as Autistic as before, and still an adult, with all that entails.

8. I know that what is normal for me is not always normal for you. I know better than to act upon the assumption that “normal” is the same for everyone.

9. I know that if you meet one Autistic person, you’ve met one Autistic person. The experiences, difficulties, strengths, personality and characteristics of one Autistic person does not reflect upon all of them.

10. I know that there’s a difference between not being able to communicate and not having anything to say.

11. I know that the world is an intense place. It screeches and screams, burns, freezes, and bursts into brilliance. It’s a place where words are too small to express the explosion of emotions flowing out of me — a place where words have yet to be invented to express a fraction of the howling fury of frustration and panic, the aching heartbreak, the stabs of betrayal and embarrassment, the abyss of despair and confusion, the weightless ecstasy of joy, the soaring heights of pure wonder, and the warm embrace of security that I feel.

12. I know there are times when people just don’t make sense, but I try my hardest to understand, even if I’m not very successful. I know that even when I can understand, it doesn’t mean that I know what to do.

13. I know that what’s called a lack of social skills for me — and requires me to undergo therapy when I mess up — is considered being rude for everyone else.

14. I know that lashing out isn’t the right way to handle things, but some days it’s the only way to deal with the thunder in myself. Sometimes it’s only my rage that lets me focus on what needs to be done.

15. I know that no amount of time is enough to fully fade the most intense memories; they stay just as sharp, crisp and clear as the day they happened.

16. I know sometimes the only other people who understand are those like me. But just because we’re similar doesn’t mean we’ll always get along.

17. I know that humans aren’t perfect. That doesn’t mean we shouldn’t try our best, but we should realize that we all have our limitations and we need to put things into perspective. A mistake isn’t the end of the world.

18. I know that sometimes you need to let yourself fall apart so you can pick yourself up again and carry on. Nothing lasts forever — the bad or the good.

19. I know that one smile can go a long way.

20. I know that there’s no force in the universe that can make me give up my interests, my “obsessions” and perseverations. These are my strengths, the passions I breathe through my being. I will not let them go without a fight.

21. I know the deep, dark fear of being alone, the stabbing pain of thoughtless words, and the empowering strength of friends.

22. I know you can have an excellent conversation without saying a single word.

23. I know that best friends are those who stay with you through all sorts of pain and struggle, who you would do everything you can to help without being asked.

24. I know that things don’t have to make sense when you’re having fun.

25. I know that diversity leads to the development, invention and creation of new ideas. Differences in thinking should not be shunned but celebrated and embraced. When we all work together to support one another, we can make a huge difference in the world.

A post from my friend. Her voice has always pushed me beyond my comfortable space, and challenged me to think beyond my own perceptions about what Autism looks like from the inside out. I have been changed, for the better, because of her insights.  We don’t always agree, but she always makes me think.

Autistics Speaking Day

Posted on November 1, 2010 by adkyriolexy

Being autistic is being set up to fail again and again, and having your inevitable failure attributed to your disordered brain.

Being autistic is being set up to fail again and again, and succeeding anyway and having your success attributed to treatments.

Being autistic is succeeding anyway, and being told that your success doesn’t matter because you still aren’t what your parents wanted.

Being autistic is having strangers pity your parents because of you.

Being autistic is having strangers express their pity in your hearing, because you obviously can’t understand them.

Being autistic is being bullied and abused every day and being sent to therapy for it, because you’re the one whose social skills are considered lacking.

Being autistic is expressing what you think, feel, and desire, and being told that you are in denial.

Being autistic is having other people dictate how you really feel.

Being autistic is being denied the things you enjoy “for your own good.”

Being autistic is being told so many times that your pain is pleasure and your pleasure is pain that you come to believe it.

Being autistic is being driven to extreme frustration every day, and being autistic is having the frustration inflicted on you blamed on your autism.

When I thought about what to write for Autistics Speaking Day, I considered what a cruel bind autistic self-advocates are put in when we discuss our struggles. Frankly acknowledging the hardships we face is interpreted by anti-autistic factions as evidence of the inferiority of our condition, proof that autism is suffering and we would be better off cured. Emphasizing, instead, the benefits, strengths, and exceptional abilities of autism, though, brings charges that we are whitewashing the disadvantages, or that we are so minimally impaired as to be not really autistic. This conveniently absolves pro-cure neurotypicals of the role they and their pathologizing attitudes play in autistic hardship.

My father always told me that I had an exceptional mind. This was why I could read adult books and decipher arithmetic and follow his wandering lectures on various topics at barely four years old. He didn’t mind that I was unable to speak to my peers; it only reduced my vulnerability to being corrupted by them. While he undeniably overestimated my superiority, his unconditional support was a lifesaving counterbalance to the relentless messages to the contrary from teachers, therapists, relatives, peers, and strangers.

A few of my earliest memories involve being introduced at a family gathering and discussed. Why doesn’t she talk? What’s wrong with her? I’m so sorry…. School was worse, with its buzzing lights and pushing crowds and devious people my size hellbent on poking, kicking, grabbing, and beating me into submission. The teachers occasionally intervened, but mostly allowed it in the hopes that I would learn to assert myself. I didn’t.

I was sent to doctors and therapists who claimed that my idiosyncrasies were the result of emotional dysfunction, trauma, or low self-esteem. After prolonged indoctrination, I began to half-accept their premises. I didn’t start out believing that my sensory seeking and social awkwardness was based on a desire to punish myself, but after being told this so many times, I couldn’t help but doubt myself. Their propaganda became self-fulfilling as I began to believe that I was dysfunctional and deserving of punishment. In any other context, this would be called severe emotional abuse, but for neurodivergent children, it is considered necessary treatment.

As I got older and more articulate, the discrimination I faced for being autistic changed forms. Because I appeared intelligent, people could not fathom that I would have difficulty understanding basic things like figures of speech, subtext, visual-spacial perceptions, and pop culture references. I could not, in their minds, have legitimate difficulties, so I must have been rude, or lazy, or intentionally obtuse. The slightest mistake would undo my hard-earned status of hyper-competent and instantly reduce me to my childhood status of “insane.” As I as so intimidated by the prospect of being outed, I learned to nod along and feign understanding. Appearing competent became much more important than being competent, which led to some of the most devastating poor decision-making of my life.

When I became a parent, however, the illusion of normalcy was stripped away. My firstborn inherited my autism, and I had to invent my own way of helping her. Institutional support for parents of autistic children, focused on treatments and cures and the obsessive quest to make children as normal as possible, was repugnant to me, and I refused to let my daughter suffer the way I had. What we lacked was a model for support and learning that was not based on a disorder-treatment model. This is what the neurodiversity movement is trying to build through the personal stories of autistic people, in their own words. Personal stories in which the very real pain and suffering and struggles and obstacles faced by autistic people are not arguments against autism, but arguments against the oppressive model into which autistic people are painfully forced. Autistics are speaking out and will not be silenced. We do not want a cure. We do not want to be made normal. We do not want to prevent future autistic children. We want radical social restructuring such that future autistic children are accepted, nurtured, and supported, and we won’t need silence campaigns for our voices to be heard.

Finally, a link to other voices in the Autism Community

This year Zora wanted to go as a ladybug

So, here is the ladybug:

Zane wanted to go as “Toad”.  Not like a frog, but the character on Mario Bros.

This guy

So, here is Toad:

“OK kids, let’s take some pictures before we go…”

We headed out to the College Hill area, an area in town they block off the streets and the residents go to a lot of extra effort to decorate all out.  It is AWESOME.  It is like the most ideal, idyllic Halloween trick or treating scene ever.  We love it and are so thankful for the residents who go to the effort.  Our neighborhood is not conducive to ToTing, so this is fun.

We met up with Robert’s family and ran into several other families we know there.

The kids even made the news. Zora is at 1:43 (near the end), and you can see the rest of us in the background as she runs down the walk, shouting her “thank you” over her shoulder. When the newscaster comes back at the end she says “Love that little ladybug girl”, which puts a big grin on Zora’s face every time she sees it.

Hope your Halloween was as sweet as ours was.

Most weeks my mom comes up and takes Zora out for the day.  It is a win-win for the kids…Zora gets some much needed social interaction, Grandma gets to create a lot of memories, Zane gets some Grandma time (we usually meet up for a meal), and Zane gets some time where it is quiet in the house and the attention of both parents.  Without Zora in the house, it is a lot easier to play more complicated games, and that is often what Zane wants to do.

This week it was the Star Wars themed Stratego.

Zora’s preschool had all the kids dress as “something from a farm”.   I assumed she was going to want either cat or dog, but I listed off all of the possibilities:  cow, duck (even had an online friend with a great costume for this), horse, cat, dog, goat, chicken….”  Jokingly, when she was oscillating between several, I said “skunk” under my breath.  She heard me and was convinced that it was perfect.  Couldn’t really argue with her with a straight face.  So, here is my “Little Stinker”

The face is because she wants to go, not stand still for pictures.  She was very enthused about the make-up.

Happily wiggling her tail.  She and Zach picked out the fun fur and the white feathers that I sewed to the back of the black coveralls (which were from Zane’s old pumpkin costume).  The ears were a pipe cleaner strung through a little jaw clip, then felt put over it and sewn together around the pipe cleaners.  It worked a lot better than attaching them to a hairband for her because they were easier to position, stayed put, and didn’t pull or dig into her head.

The project was to make your own pumpkin pudding.

She had a lot of fun with her costume, swinging her tail around, and chasing her friends around “spraying” them with her tail.  I don’t think she understood the mechanics of how a skunk sprays exactly though; she would pick up her tail and say “spray” while aiming her tail like a hose.  The other kids giggled and made a lot of “eww, stinky” declarations, so it was all good.

I missed the “in costume” part of the instructions, but since Zane’s costume wasn’t complete anyway (bad mommy!), he wouldn’t have been able to wear it.  They really enjoyed the party though.  They had a bunch of different, creative activities that both of the kids enjoyed.

Among the activities were apple bobbing…

(I ended up holding Zane’s hair out of his face, but it was still something he could not get.  I am debating whether or not this is a skill I need to teach. )

and pumpkin painting…

Zach took Zora to her dance class on the day parents could come in the room and take pictures.  So here are some shots from inside the room (instead of through the door)

We just had a massive meltdown over here. Took a while to figure out the problem…Zane was going around turning on each faucet, then screaming in despair: “not enough water”, then trying to access the basement where the hot water heater is. I realized the washer was filling up, causing the water pressure to be low. I waited for it to finish and then showed him the water was fine again. It took a while to explain to him why it was ok. He keeps me on my toes.

I took a terrifying leap and got back into theatre after a twenty year absence.

From a blurb I found online:

You know Karen Robu from her theatre work in Wichita since 1993. She now presents her first written play about the life of Antoinette Brown Blackwell, first female ordained minister in the United States and a Suffragist who encounters other historical figures such as Lucy Stone, Elizabeth Cady Stanton, Sojourner Truth, Susan B. Anthony, and Fredrick Douglass as she fights not only for the right for women to vote, but for the right for a woman to stand in the pulpit. A wonderful time for this play to be presented since this year is the 90th anniversary of the 19th amendment giving women the right to vote.

I played a very minor role, Ernestine Rose, a feminist, atheist and orator.  It took me a bit to get my footing on the role, and I realized how out of practice I was at the craft, but I did finally get t0 the point that I wasn’t humiliated at the performance.  I wish the run would have been longer because I never got to that magical point in front of an audience that I was just beginning to achieve in front of the mirror at home. I know the next time I do it, I should be at that point before I get in front of the audience.   But, at least I wasn’t mortified at my performance, and that was a real possibility at some points along the way, especially as I was struggling with the accent.  I had to lip sync some of the music because I am a contra-alto/tenor and, in an all-woman’s chorus, with everybody else being a professional singer except for me, my voice wasn’t going to blend in the higher ranges.  In the songs where they just wanted it belted out (like when we were “marching”), non-perfect voices was the aim, so I could contribute heartily in those songs.

It was so good for me to do this.  It was sheer terror at times, especially when the music rehearsals started and I realized the level of the musicians, and, despite being held in a church, most of the actors where professionals, and it is a good thing I didn’t have access to their bios before I started, because I would have been even more intimidated than I already was.

In the end, it was an awesome experience, and re-awoke my passion for the stage.  I should have been doing this all along and can’t imagine why I haven’t been.  It fills a place in my soul that I didn’t realize was empty.  And next time will be easier and better because I finally figured out *how* to do it again.  (how to memorize, how to analyze the character, how to find my rhythm). I wasn’t, by any means, the best actor on the stage, not even close, but I felt like I was able to hold my own.  It was an absolute honor to be able to perform in such awesome company.

It was also fun to be in costume again.  And yes, that is my real hair.  My real hair, in a seriously unflattering style, with a ton of product making it feel like Barbie doll hair.

After the show, Zora (who had been downstairs in the nursery) was fascinated with the costume.  It was a very hot and heavy dress, made out of upholstery material, even the fringe was upholstery-like.  There were copious “Scarlett O’Hara” comments.  Unlike most stage costumes, this one was NOT designed for quick changes.  I think it took almost as long to get on as my wedding dress did.  I did discover that hoops are much more comfortable than crinolines though, and much quieter, as long as you don’t sit wrong and flip the whole skirt up into your face.  lol.   Learning to walk so I am not swinging like a bell was a trick too, especially since it was easier for me to wear heels than to shorten the costume.

After the show Zach told me that during the intermission the people in front of him pulled out their program, looking specifically for my character.  Upon reading the bio again, they commented to each other that “it was amazing that they found a Polish actor here in Wichita”.  I guess I nailed the accent.  Yay me.