In the year since I last posted, life has been one big ball of chaotic. After moving out of our condo, we lived in two different apartments, went to Korea a bunch of times, dealt with some hostile neighbors, and ended up doing what we swore we’d never do – we moved out to a house in the suburbs. At long last, life has settled down into some sort of routine. But we can talk about that later.
There’s a book I’m looking forward to reviewing that facilitates an understanding of death and dying from the point of view of an autistic person – not just “where do they go” but the practicalities of what people say, what rituals people have, and how grieving might happen.
After everything I’ve been through in the past year, I can’t stress enough how important it is to have a conversation about this. (Parents, are you listening? This can’t wait until they’re older.) You never think you need to know this kind of thing, and then you do. NTs somehow pick up this knowledge from each other – it’s a little bit like weddings or babies. But somehow I was always left out of that stuff and the first real encounter I had with death and funerals was my own parent. When no one has ever explained to you what really happens when someone dies, you don’t know how to plan a funeral or run around picking up the pieces of their life.
Thank you to everyone for all the support and kind words; you know who you are. I absolutely would not have survived the past year without you.
P.S. – I don’t know why the font size is now so tiny. I shall work on that.
I, for one, am eager for November to pass. Should I call it The Month That Should Never Have Been?
The first half of the month was a nightmare due to the New Home Fiasco. For so long I had assumed that moving would be the end of our months-long journey, but little did I know the worst of it – the intense sensory overload, the helplessness – was yet to come. I’ll have to write about it another time because it’s still unresolved and I don’t know how this one ends.
Once I was ready to start moving on, I found out that my mother had passed away. The rest of the month became a whirlwind of traveling to a foreign country I hadn’t been to in decades and where I barely spoke the language. Making the situation even more complicated was the fact that I hadn’t seen my mother since I was a young child (although no, I’m not adopted).
There were moments when I felt there were so many decisions being expected of me that I might just implode. And that’s when my husband would tell me to stop trying to solve every problem at once and just think about what needs to be done in the next minute, or the next hour. Every time I insisted I couldn’t do anything because I needed to make ten other decisions first, he’d shake me out of my paralysis (or as my friend Sharon calls it, inertia) by telling me to stop dwelling on the decisions and just do the small things I needed to do. He was right.
It’s amazing how blunt people were in the things they said.
“Why do you have no emotions?”
“Why aren’t you warm and emotional like other Korean women?”
“Why do you think so long before you respond?”
I also got other rude comments from strangers on the street about how I must be poor because of my clothes (they had no knowledge of American styles or brands). It’s not a place where you’d want to be different from the mold in any way. At one point I was feeling pretty frustrated about this when I heard a couple of girls talking loudly in English about the same thing. That’s when I realized that they too had been bullied by Korean girls for being “different”. I glanced at them and saw that they were probably the only girls I’d seen all week who hadn’t had plastic surgery (besides myself) and didn’t put on a fake act. And then I didn’t care so much who thought I was “weird” or “cold” or not the most perfectly dressed.
So here’s to a better December. Thank you again for all the support during this time; I can’t tell you how much it means to me and how your friendship has carried me through what could have been a much much worse experience.
Yes, I’m still here. Since my last post, I’ve gone through so much that it’s a struggle to put it into words…no matter how resilient I’m trying to be, the hits just keep on coming.
Some of you friends know what I’m going through and have been so helpful and supportive. I’m so grateful for all your love and promise I’ll be back soon, ready to talk.
As we celebrate Autistics Speaking Day today, let’s put to rest the notion that verbal speech is the golden standard of communication.
Some of us rely on text or pictures. Back in the day, friends used to make fun of my college roommate and me for IMing each other from across the room. Now my husband and I email each other from adjacent rooms because it’s easier to make out the words. I misunderstand him so often when he talks that it’s just easier to email. It probably makes sense that I learned to talk and read around the same time as a child – I needed the letters to break down the sounds.
But people tend to assume talking is the only option. You either talk or you can’t communicate.
I know, it’s hard for people to break old habits. The default, especially for those who did not grow up with newer technology, is to communicate via phone. Social media? Oh, isn’t that for Farmville and celebrity stalking? But for many autistics, it is our lifeline.
Next time you get in touch with an adult on the spectrum, resist the urge to say, “call me” or “what’s your cell phone number?”. Instead, try asking, “what’s the best way to reach you?” It may not be the phone at all – it may be email, text message, IM, Skype, or another mode of communication. Are you ready to learn something new?
You know you’ve been there. Someone is talking to you, and you only manage to catch two words out of the whole sentence. How can you make sense of kjdf hoijakld gfkdjgjg be a lkglkj?
At this point, you could react one of a few ways.
1) Pretend you heard nothing. You can’t even be sure it was intended for you…maybe if you don’t react the other person will say it again?
Most likely the other person will figure out that you are ignoring them and get upset.
2) Ask the person to repeat him/herself. Potentially embarrassing.
The other person will probably repeat the sentence, although they quickly get annoyed if you’ve done this more than once. So you learn not to do this every single time you misunderstand.
3) Try to guess what the person is saying and predict what response they want from you. If their tone of voice sounds joking, you give them a smile or even a hearty laugh.
There is the long, uncomfortable stare when you get it wrong and the other person decides you were either not listening or intentionally being rude. And then you do the quick, “wait, WHAT?”
What do you do?
As someone who loves to cook from scratch, it can be hard to get around the fact that I have such a repulsion to touching slimy things. I hate getting my skin wet, and having to touch dough, raw meat, or sauces makes me want to crawl out of my skin. It gives me the eeps, big time. But I’m pretty determined that nothing’s going to stand between me and good food made from scratch.
When it comes to pie, I insist on making the crust myself to get the texture right. That means having to handle the dreaded dough, however. Would it be possible to make a pie crust without touching the dough?
Using this recipe from Simply Recipes as my starting point, I found that there really is at least one way (if not more) to get this done.
Instead of putting the dough directly on the counter, I put it on a piece of plastic wrap. You’ll see why in a moment.
To form the dough into a ball and knead, I bring up the edges of the wrap and then worked with the dough from outside the plastic. That way I can knead it without touching the surface. FYI, flouring the plastic beforehand keeps the dough from sticking later on.
(Alternative: I’ve heard you can use a stand mixer with a dough hook. Personally I like the idea of less cleanup, but maybe I’ll try my mixer one of these days.)
When rolling out the dough later on, I just unwrap the plastic and cover the dough with another layer of plastic, so that it’s sandwiched. Instead of rolling the pin right away, I use a technique I learned from a Bobby Flay throwdown – press down with the pin several times going down and across to help spread it into the right shape. Then finish rolling it out.
When you pick up the rolled dough, it should be easy to handle between the layers of plastic. You can just peel the layers away as needed!
(Q: Why are the edges of your crust so ragged and ugly? A: Because that’s my bottom crust and it got covered anyway!)
Beth Aune, Beth Burt & Peter Gennaro
151 pages, available from http://www.fhautism.com/ and http://www.sensoryworld.com/
What really stood out for me about Behavior Solutions was the format. It’s small enough to carry in your bag without dislocating your shoulder, and instead of the traditional format of long chapters filled with theory, this book is broken up into short 3-page sections. You simply look up a challenging behavior in the table of contents and find several solutions in the corresponding section.
The format makes the book great to use when you need to solve an issue right away, or when you’re working during a lunch or prep and need to brainstorm interventions without the help of a special ed teacher. Because let’s face it, not every regular classroom teacher gets as much training or support as we’d like when it comes to special ed and challenging behaviors, but every class will have at least one student who challenges us daily.
As a teacher, I’d say the solutions offered are extremely practical and effective. It made me smile to see some of the interventions my colleagues and I used successfully with our own students, although how nice would it have been if we had this book at the time and didn’t have to reinvent the wheel? It’s extremely empowering to have a set of options right at your fingertips instead of having to ask someone else.
As someone on the spectrum who has personally used many of these strategies (“busy tasks”, chewy foods, sturdier pens) as a learner, I can’t recommend this book enough. The average teacher works so hard but has no idea how to connect behaviors with the right solutions, and Behavior Solutions can explain instantly what hours in continuing ed and workshops may not.
Bottom line: This is a must-have book for teachers (as well as parents) who’d like quick and easy access to effective ideas for handling challenging behaviors in the classroom.
(A review copy of this book was provided by the publisher.)
