Autistics Speaking Day 2015: Appliances Talk

I don’t have any great topic to talk about that I’m up for assembling today, so I’m going to write a bit about some of the household appliances that are important in my life, and ones that are helping me live a better life.

Last weekend, my Oster Kitchen Center (which is a stand mixer that can change out parts to be a food processor, or a blender, or…) died. Specifically, the motor burned out.  This mixer has been an important part of my life for the past few years, and I have a strong emotional attachment to it. It was the perfect mixer- two bowl sizes, including a huge one, set so that it can mix even the smallest amounts of egg in the bottom. Able to handle dough and meringue, it was a great treasure for me, a dear friend.

The Oster came from my mother for my birthday a few years ago. She’d gotten it from a yard sale barely used- the woman’s grandmother had given it to her for her wedding 20 years before and it had mainly sat in a cupboard for most of that time as the woman wasn’t a wiz in the kitchen. My mom picked it up for something like $30; a good mixer with a dough-tolerant motor today is several hundred dollars, and that’s without the attachments. (Turns out that kitchenaide considers making bread for your family once a week is “commercial level of use” according to the reviewers who have reached out to their customer service on the more recent models.)

I formed a strong emotional attachment to the Oster. It was a friend to me. Just seeing it in the kitchen and knowing I’d be using it over the weekend would give me a smiling feeling. They say  that autistics might form “inappropriate” emotional attachments to objects but not people. I say it depends on the objects and the people- if the people in your life don’t know you well or don’t accept you but your object is predictable, then of course you will have stronger attachments to objects than people. I have a number of decent people in my life who try to get me that I have an attachment to, but there are also objects that are my “friends,” that I have bonded to emotionally.

The Oster and I were making meringues all last weekend. We were practicing them- my mother is gluten free, and I wanted to try using meringues for her birthday on the 27th. (Happy 50th birthday to my mom, BTW.) And then Monday I started on our final product: cute lids for the custard pies that would spell out “50” over two pies. On the second custard of 4, the mixer stopped halfway through adding the air to the egg whites. I tried the breaker box. I tried unplugging and plugging back in. I even tested the outlet. But it was the Oster’s Motor.

A close up of a pink meringue in a bowl under a mixer

I was devastated. I kept on with making the pies without the meringue, but I kept crying any time I stopped for more than a few seconds. I’m still grieving the Oster, if I’m honest, but a lot of people don’t understand that. The next day my mother let me borrow her standing mixer, but it’s not the same. the beaters don’t reach the bottom of the bowl so you can’t let it take care of things while it beats stuff. it’s harder to add things to. It’s just not the same as the Oster. And it’s not built for the level of baking I use to sooth myself.

I love baking. I love the experimenting and the building of it. I enjoy testing and developing my skills, and the Oster let me do that at a level that matched me. I might only bake on the weekends barring special occasions, but I bake a LOT on those weekends. I make my own bread, I make cakes, I make pies, I try new techniques. Now… I don’t know. It’s more economical for me to get a bread machine and a mid range mixer than a mixer that can handle bread dough regularly. I’m wary though. It will never replace the Oster for me. It won’t be the same. My heart is sick just searching. (And that doesn’t add in the food processor, which I’ll also need to replace since I use it. I have another blender, though.) Rest in machine heaven, my friend. I miss you every time I step into the kitchen.

A white Oster Kitchen Center with the Mixer part attached

The other appliance I’m going to talk about today is my Panda Washer/spin dryer.

I currently live in a second floor apartment. My joints and balance are screwy, so I walk with a cane so that when I fatigue I don’t turn my knees or ankles. I can’t carry large objects up and down the stairs very well or very consistently. Since there’s no laundry in my apartment, I’d also need a way to get laundry to and from my place to the laundromat.

Realistically this meant paying my brother to do laundry for me when it was convenient for him. He tries hard, but I couldn’t exactly be sure I’d have enough clean clothes to get me through if I had to travel. I’d periodically end up having to do laundry in my bathtub, let the laundry drip dry inside of the shower curtains, and hang the laundry all over my place. While not a huge deal to have the laundry hanging around, sometimes for a week before being dry, it’s hard to do laundry by hand.

Then a little apartment washer came through my social media feed. While a little bit pricier than I typically spend on things, it was a small fraction of the cost of a full sized washer, and it had a spin dryer. I ended up talking to my payee person and had him arrange things so I could have enough spending money the next month to purchase one.

My model is a Panda Small Compact Portable Washing Machine (6-7lbs Capacity) with Spin Dryer.  It’s more work than your typical washer but it’s a life saver. Here are the steps I follow:

  1. Making sure that the drain hose is in the sink and the drain switch is set to wash, fill the tub with the fill hose. The fill hose attaches to the sink faucet on one end, and drapes into the wash bin in the other. The fill time is about 5 minutes?
  2. Add a TINY amount of laundry soap. I’m serious, it needs hardly any.
  3. Close the lid and set the timer to the appropriate cycle length. The longest is 15 minutes, and I usually just set it to that to be certain, though it could be as low as three minutes for undergarments.
  4. When the cycle is done, switch the drain switch to drain. This takes about 5 minutes. You can optionally wring the clothes or if you have only one garment in there (like I usually do) you can throw it in the spinner while the wash tub is draining.
  5. Wipe down the wash tub, clean the lint trap and re-secure it, switch the drain switch to wash, and fill the tub again.
  6. Close the lid and set the timer to the appropriate length of time for your rinse cycle. When it’s over, double check that there aren’t suds. If there are you’ve added a little too much soap to the wash cycle and it will need another rinse. If so, repeat steps 4-6 until there aren’t suds.
  7. Drain the wash tub, and put a garment at a time, two max, in the spinner. It will spin out a lot of the water, so you’ll have something that is just damp and can be hung any where without worry. I have washing and spun something one day and been able to wear it the next.  The longest spin cycle is 5 minutes. Make sure that the load is balanced. If it is, after it is up to speed it will be very quiet. If it continues to shake, the load is unbalanced and you need to re-position it.
  8. Hang the spun clothes on hangers someplace where it can dry. There will probably be lint involved, so if you are wearing them to work or other important places, invest in a lint roller?

It is a lot of steps, but it’s a thousand times better than hand washing everything and now that my laundry is caught up, I have less of a stressor. It also is helpful for autistic reasons. I can wear literally the same dress every other day and have it be clean, instead of buying two of the same dress on sale. I can wear exactly whichever of my clothes I want when I want.

If you have easy access to a regular washer/dryer, you probably won’t understand the sheer relief I have right now. (You should probably keep with those if you have access to them- the amount of work involved can be overwhelming for people used to modern washer/dryers.) It is amazing.

small white panda washer next to my bathroom sink. It fits easily into the space and the drain hose points into the sink. The lids are closed and you can see the dials.

The down side is that I can’t wash my blankets in it. It’s not big enough for the spinner to fit the whole blankets. But it can handle individual sheets and all of my towels, and all of my dresses that can be washed in a washer. Another issue is that the drainage hose can seep a little, but it’s not enough to be a huge issue- I just have a towel there that I change out periodically and it’s fine, but buying a washer mat would also work.

You also need to keep a dish towel nearby to wipe down the lid and control panel in between tub fulls. I don’t actually count this as a downside, but some people might. The reason is that the control panel needs to be kept dry.  I had a week where the spinner timer was on the fritz because it got wet, but as soon as it dried out it was as good as new.

I also run a whites or empty cycle with bleach once a week to keep it clean and mold free. I let them soak overnight in the bleach.

So that’s the Panda washer. It has really helped me with my stress levels by making one major task less overwhelming and less unpredictable.

a red circle cross out symbol, crossed out by the same symbol facing the opposite direction in a spectrum of colors, with the words “Autistics Speaking Day 2015 participant”

Read other Autistics Speaking Day 2015 posts! Or submit your own Autistics Speaking Day 2015 post!

Stimming in Public (and Breaking All the Rules)

I recently put together a video of me Stimming in Public. Regardless of the reception (which has been great!), it has always been intended as an ongoing project for this year.

If you have been following me on facebook, you might have already seen the video I recently put out. In it, I document myself stimming in public spaces during my recent Baltimore, MD and Washington, DC trips, all set to “America” by Orphan Songs. (I really liked the song, and feel so glad that the artist had it up for Attribution and Share Alike use via Creative Commons.)

Some of it was organic- I was there, and happened to think of pulling out the camera on the train, at baggage claim at BWI, and at the Baltimore Waterfront. Others were planned in that I went there with the intent of shooting some video. I spent a long sunny day at capitol hill filming at the Supreme Court, the Capitol building, Library of Congress, Department of Health and Human Services, and the Department of Education. It was both exhausting and satisfying, not just as an art effort but also as someone who was made to feel scared of the potential actions that could be done in the name of these places.

(There are captions at youtube of the song, even if they don’t make it in the embed.)

This, as I’ve mentioned, was never intended to be a one-shot thing for me. I mean, I’m going to be doing the stimming when I’m in public anyways, so I might as well film it in case it does something positive for someone else, right?

Therefore throughout the year 2012, I’m going to be putting together a video of me stimming in public for every major trip. I’ll try to get some interesting/meaningful locations in when I can, but most of it will just be what I have access to since almost all of my traveling is for advocacy events.

Between now and July1st, I know I’ll be going to Harrisburg, PA; Chicago, IL; Seattle, WA; Woodburn, OR; and Detroit, MI. Later in the year I’m hoping to get back to Washington, DC and to visit family in the area of New York, NY; Wallingford and Hartford, CT; Providence, RI; and similar locations. (I’m really hoping on the CT-RI trip to get a chance to film with some people in front of the JRC!)

If I get more things scheduled later in the year, I’ll be filming at those as well. It’s basically an every-chance-I-get thing for filming these. I mainly will be doing them on my own, though I hope as the year goes on to be able to have multiple people in the shots with me. Indeed, I’d love towards the end of the year to have a chance to film a bunch of people stimming together at once. I think it would be really. . .  evocative, to end a series with a community together, when it started with me all by myself. But that’s just a thought, not a plan.

That is the project summary.

I don’t want to act like this is an idea that is exclusively mine. First of all, I’m sure I’m not the first person to think of it or do something like it. Secondly, all I’m doing is filming myself living life as myself, something I hope to have be a reality for all Autistics. It’s scary, but someday it won’t be. Someday I hope to meet young Autistics who were never afraid to stim in front of Authority, who never had to deal with the ableism it can be met with. Autistics who won’t have to make the choice between safety inside of their heads vs safety from people’s bigotry outside of it.

That being said, if you decide to do something similar, let me know! I’d love to see members of our community going out there and doing this if they feel so inspired. I feel like that would be something amazing to see.

The Hard Things

Often, but especially this month, there tends to be a false equivalency that gets promoted- that Neurodiversity advocates ignore the hard things, or that we don’t experience the hard things. From there, self-advocates are told that we can’t speak to the lives of other, usually younger, Autistics.  Obviously this is false. The hard things are a part of our lives, are a core part of them.

On the 18th of March, I had to go to Baltimore. To manage airports, I have a pretty set script that I follow in order to make sure that I make it through the airport and flights. Usually it works fairly well, and if I get confused I let a security person know I”m Autistic and it typically works out. The first time I went through security by myself, I had a TSA agent walk me through the security point step by step. (I have a soft spot for Pittsburgh, PA’s TSA agents as they’ve treated me fairly well. I can’t speak for anyone else’s experiences though.) I’ve had people let me be or give me appropriate instructions when I’ve lost words. Mostly I have decent experiences. Not as peaceful as trains, but decent.

Except this time I flew southwest, and their gate check process is different. Instead of picking your bag up at the gate, they put it through to the carousel in bag claim, and instead count it as a late bag check. A bit nerve wracking as I rarely if ever do a regular bag check. But this wasn’t the hard part. Nor was sitting on the floor next to the assigned baggage carousel for an hour. (I took video of myself rocking there, and it is edited in with other video on my youtube channel.) But by the time I got through what my bag looked like, I couldn’t verbalize words any longer. The words went away. Thankfully the BWI Southwest baggage customer service acted like it wasn’t unusual at all for someone to get out a netbook and start typing instead of talking. I also had to get help getting on the van- which was directly across the room- to the hotel.

That evening, I had to leave dinner because I couldn’t sit upright any more. My brain was completely done, and I poured coffee on the table because I could no longer judge where my cup was in space. The next morning, I couldn’t get out of bed because I had no clean clothes. The very thought of putting on dirty clothes Shut me down for hours. Thankfully, the thing I was at was Developmental Disability centered, so the organizers were understanding, ordered me lunch, managed dealin with the airline and hotel, and the person I was supposed to facilitate with took over my duties. (Thank you Nachama!)

And this is only a mildly hard “day.”

Even the tiny Hard things add up. Loud noises making me need to hide, camera flashes leaving me utterly disoriented, the wrong smells, colors, and textures- the little hard things could make me have issues where I would normally have none or even where I’d normally excel. I curl up in a ball in a grocery store because I don’t know the practical steps rather than economic difference between using credit and debit. I sit on floors in airports for hours because I can’t figure out the steps to get to my hotel. I get C-Diff or MRSA because I can’t remember when to clean. I pee myself because I hear the wrong noise and become scared. I can’t tell until the last moment that I need the restroom, and then I better get running before I forget or lose control.

A thousand tiny hard things.

I had to live off campus because I didn’t understand paperwork for housing and couldn’t figure out that I needed help. I had to drop out of school and became house bound for 6 months because I didn’t understand or know how to ask for help with school tuition or paperwork. I watched my carefully laid goals collapse, and can’t do anything beyond repress and hide when people I know graduate or talk about completing midterms. I lose my ability to conceptualize my goals after having plans go awry.

A thousand hard things.

Becoming homeless for a thousand tiny reasons. Being unable to navigate the housing system, and having to rely almost entirely on my Intensive Case Manager to even fill out the forms let alone deal with the people. Having difficulty with a form because I want to answer truthfully but have no idea how much people have spent buying me toilet paper- and then crying, pacing, yelling the same phrase repeatedly and staring at blank walls. Hiding in my 3 year old niece’s closet because I can’t calm myself, can’t process my environment further to get away from what is bothering me. Being trapped in town because I can’t speak that day and I need to find a way out.

Hard things.

Knowing something is wrong, large or small, and not having the words for it for 5 years. Being told I’m articulate when I can’t get my basic needs across to be met. Trying to report abuse, and not having the words to articulate it yet- then having my call dismissed because of my disabilities and inability to articulate it. Pressing myself into walls or running into them full stop because the pressure is soothing and I can’t get my world to stop- and then being treated poorly for daring to do so. Being put through unneeded procedures because my self soothing behaviors look scary to others, and echoing (oh echolalia!) their words back when they ask why I do them- Is it because of self hate, self loathing? Do you want to die?- because I don’t have the words yet to tell them how it really feels in my head.

Life is full of hard things.

But the hard things don’t make that life less worthy. It doesn’t make it okay to deny accessibility. It doesn’t mean you can’t adjust a little- and often to mutual benefit- to make the world more navigable to us.

The Hard Things don’t take the joy out of it. It doesn’t make the self soothing activities less self soothing. It doesn’t take the joy of observing the infinite diversity of our world within even human neurology- a joy that we can share, if we are willing, despite having infinitely diverse faiths or even having none at all. It doesn’t make my niece’s bringing me my stuffed cat less an act of love. That my former cat, ‘baka, was my service animal that I needed to help me self regulate doesn’t make my affection- nor even my grief at her passing- less deep.

The Hard Things, though, mean that you will look at them and say:

I don’t want that for my kid.

That is not safe.

That is too strange to do in public.

If you’d only “pull yourself up by your bootstraps” and get over it, the hard things wouldn’t be hard.

Your tears and meltdowns prove my point of your incompetence/that you will always be a child.

instead of finding a way to make the hard things livable. Instead of accepting that I need help today even if I didn’t yesterday. That I am an adult who is able to make my own choices- even when they are bad ones. That the reason it’s so strange is because of repression. That there are ways to make this all safe. That risk is a part of being human.

That there is joy in being one’s self.

Written for Autism Acceptance Day and Month. Many Thanks to Paula Durbin-Westby for originating Autism Acceptance Day and all the effort she has put into this event- please go check out some of the other posts she’s collected. Thanks also to Emily T for her sharp editorial eye.