Friday, May 30, 2014

Ajit Narayanan: Communicating in Any Language

Last night, I had the joy of talking with the rest of the MHKC @ PSU staff, and a ton of interesting conversation ensued. I was prompted to go check out a TED Talk by Brene Brown, which naturally led me down a TED rabbit hole (rarely a bad thing). Sometimes I feel weird about using this blog to share longish videos--specifically TED Talks--with you all, but I just like them so much and think there is a lot of thought-provoking content found in them, so I like passing them along. 

Anyway, I found this neat talk that discusses language, autism, technology, and different methods of communication, which are all things the MHKC @ PSU staff find particularly poignant. So here we are! Take a look, take a listen, and spread the ideas!

Friday, May 23, 2014

A Perfect Pair of Signers

Rosie, a resident at the Central Nebraska Humane Society, had a difficult time opening up when she first arrived at the shelter earlier this year. Workers had a hard time connecting with the shy pit bull mix and couldn't figure out why she was so unresponsive. And then it hit volunteer, Tracie Pfeifle: Rosie was deaf. She wasn't coming out of her shell because she had no way of communicating with her human companions.

Happily, Pfeifle began teaching Rosie visual signs, and the dog's attitude completely changed.

“It was just amazing to watch her blossom,” Pfeifle says. “I don't think she knew how to be a dog.”

Even though Rosie was happier and picking up on her sign language quickly, she still needed to find the right owner. The story would not be as good if it didn't have a happily-ever-after ending! Fear not; it does:

Cindy Koch had always wanted a deaf dog. Koch, who is deaf herself, says she wanted to relate to Rosie and understand how she feels. Since Koch and her family already know American Sign Language, learning Rosie's sign language was no problem. Plus, they plan on teaching Rosie more signs.

“I'm going to teacher her my sign language, how deaf people communicate,” says Koch. “She's a smart dog; she can pick up fast.”

It looks like a great match!

(And it also goes to show that there is a shelter pet for everyone! If you're looking for an animal companion, think adoption first. They need you as much as you need them!)

Happy Memorial Day weekend, everyone!

Friday, May 16, 2014

To Stand Up To Bullies

Around this time last year, I watched the documentary “Bully” for the first time. I admit, I didn't want to watch it. I thought it would be like the typical anti-bullying assemblies my friends and I weren't brave enough to ditch in high school. You know, the kinds of things that kids who bully wouldn't hear and kids who didn't bully didn't need to hear.
“Raise your hand if your peers have ever hurt your feelings.”

“Raise your hand if you've ever hurt somebody's feelings.”

Activities that produce more eye rolls than eye openers. I didn't want to watch it, but when I walked out of class that day after getting through only the first half of the movie, I felt sick. Everyone was silent. My friend and I didn't know what to say to each other as we made our way—slower than usual—to our next class. She was the first to say anything. A sigh, and then, “Well, that was...”

I groaned, looked at her for a second before shifting my eyes to my feet, and started crying. Then she started crying. We didn't want to; it just happened. We must have looked ridiculous: two girls standing in the middle of the sunny park blocks between picnickers, slackliners, and sunbathers, wiping our eyes and looking at the ground. This was not the typical, ineffective anti-bullying push.

Today I want to share with you something from The Bully Project, a social action campaigned inspired by the film “Bully”. I'm not expecting you all to have the kind of reaction my friend and I had to “Bully”; I just think it's a good campaign that should be given some attention. So here you go!

During an exercise at school, Jake spoke his mind about being bullied by his peers. Jake, who has autism, called his classmates out for making fun of him, not taking him seriously, and not trying to get to know him. In the video, filmed as part of The Bully Project, Jake starts off tentative, but he gains momentum and manages to say quite a lot in a short period of time.

Often, it seems that standing up for yourself makes the situation worse. Luckily for Jake, his situation has improved considerably since confronting his classmates.

From Upworthy:

"Bullying has had a big impact on my life, but since the movie I’ve made a lot of friends. Recently, I have joined my high school football team! At first I thought they would all be complete jerks, but actually they are pretty cool guys and have helped me through a lot of situations — they stand up for me!

"For other kids with autism, if you're getting bullied, try and tell them to stop and not give a reaction — if that doesn’t work, go to an adult. It might seem hard cause we can’t handle stress as well as other kids, but you will get through it and you’ll be awesome — actually you already are!

"Bullying does not make you cool — you might think you are on the top of the food chain — but you’re not going to be there forever."

We're all just people, so lend kindness and respect. Have a great weekend!

Friday, May 9, 2014

Nervous Mom: The Story of a First-Time Camper Parent

Hey everybody! I have the last of our Parent Perspective stories today, but here's the trick: Robin Yozzo, mother of camper Alex, had so many enlightening and lovely things to say that I couldn't bring myself to cut anything out. Therefore, Alex and Robin's story is pretty long. I, of course, strongly encourage you to read all the way through, though. It's long, but absolutely worth the read, especially for future counselors and camper parents. Camper parents! I mean it! Read on! And enjoy. :)
Here's Robin Yozzo's story--in her words--about her son, Alex, and their first experience with Mt. Hood Kiwanis Camp:

Alex was a fresh 14. He had literally turned 14 two days before he went up to Kiwanis Camp. He had never stayed away from home on his own. This was truly a first. Other kids—typically developing kids—who are 14 have the possibility of staying away from home a lot of times. You know, it's high at 14. This was his first time away, and not only was it away, it was far away. It's like three hours from Eugene to Mt. Hood to drive, so a six-hour round-trip for us. It was a social worker who told us about the program back in September before the January that we had to register. And I honestly thought she was nuts when she first emailed me about it. I said, “Did you email me by mistake? This is Alex's mom.” And she said, “No, Robin, I am talking about Alex.” And truly I thought I was going to throw up. There was a lot of that feeling nauseous while we were on the topic. Seriously, I thought, “Are you kidding me?” But I did write it on the calendar, because she said, “Even if you're feeling funny about it now, write it on the calendar because you have to register in January for July. You have to be ready; the spaces fill up fast.” So I wrote it on the calendar, flipped the calendar back, and didn't really think any more about it. 

Before I knew it, it was January and I thought, “Well, I'd better just sign him up. I can always sign him up and then say 'No, thank you,' but I'd better get him a spot.” It was really easy to sign him up. That process went really smoothly. I did sign up to have a companion go with Alex because he's got severe cerebral palsy from birth. Full term baby, just Surprise, here's Alex not breathing well at first, lack of oxygen to his brain. He doesn't speak at all, does not eat by mouth. It's fully through feeding tube. He does have a seizure disorder that is controlled by medication. He doesn't bear any weight. You know, he's completely dependent on whoever the caregivers are who are with him, so you can see where my fear would come from. If he knew something was wrong, he couldn't even tell anybody. It's that we know him best, and we had to completely say, “Okay, camp counselors! Here's Alex, and we'll see you in five days.” We could just do our best to tell everyone about Alex, and our paperwork went up ahead of us. 

They knew about Alex before we got there, but only on paper, you know. That's where the fear as a parent came from just taking him up there and leaving him there. Gosh, I feel a little nauseous just thinking about it now because it was just so emotional! I can't even describe it to you. It was so scary! 

We ended up not even taking the companion up with us. I called Lindsay up in February and said to her, “I don't know if I even need to do this companion thing. Can we just talk about it?” And she put me completely at ease. I told her all about Alex on the phone—all the details. He doesn't really sleep well at night because he has sleep apnea, so not only is he attached to a feeding pump, but he also has the CPAP on. He needs to be changed. It's just a full-on caregiver mode with Alex. 

Lindsay said, “I don't hear anything that makes me think you need that extra caregiver companion. It's up to you, but I think it's going to be okay. We have a nurse on board 24 hours, he's going to have at least one one-on-one counselor.” That's where the students come in. She actually made me feel comfortable letting that slot go and say okay, we don't need the companion. You know, let somebody else who needs that companion take that slot.

So we got up there—it was very easy to find, and the list of things they told us to bring was very helpful. The check in process was very easy. We actually ended up with two counselors, Marie and Brenda. One was studying to be a life skills classroom teacher and one was studying to be a physical therapist, so Alex was perfect. They were perfect for him and he was perfect for them. It was a great match, the three of them together. It's funny—when you tell me that folks are nervous to become counselors, it makes me smile because when we got up there, the two of them, Brenda and Marie, were right on Alex. I didn't see a fear of being around Alex, but there was such an eagerness, like they had clipboards with questions. Because they had heard about Alex and read about him, but they didn't know him. It was funny, because it was like, “Well, what medications does he take?” and “How often a day is that?” and “What is that for?” And these were things that they didn't have to know about because they wouldn't be doing the medications. It was just interesting because they were so eager to know about Alex. It was awesome.

There was another lady up there, Amber. She had been up there for years—I want to say this was her third or fourth summer helping out up there—and she was going to be working up there the whole summer. She's a life skills aide in a classroom, and she saw the fear on my face when I was checking in with the nurse and checking over Alex's machinery that he's hooked up to, and she said, “Robin, this nurse that checks you in delegates to the rest of us. This one nurse is not going to be doing all the kids.” She could see that I just felt like “Oh my gosh.” You know, this was the part that was scaring me. 

So I found that folks were really...perceptive. The could see the nervous mom. I had one wheelchair wheel out the door ready to go back down the mountain and take him home if one thing had put me off, you know what I mean? That's how I felt! Meanwhile, Alex was completely smiling, laughing through the whole thing. We were hardly with them for any amount of time. We got in, showed them his pumps and everything, unpacked some of his stuff. They even took care of putting most of the stuff away, honestly. We changed him so that people could see how to get him out of his wheelchair and get him on the bed and what's comfortable for him. And then they said, “Okay, Mom and Dad, we've got this.” And I said, “Wow, I think we're being dismissed!” And they said, “Yep! We feel comfortable. Go ahead; we're good.” I think they figured I would just stay there all night, you know. But they were so good and respectful about it, really.

We did have sleeping issues the next day. My husband and I went hiking, you know, because he had planned to do things that weren't Alex-friendly. Things that we couldn't do if Alex was with us. So we were hiking and my phone rang, and sure enough it said “Kiwanis Camp” and I thought, “Oh, no. What happened?” There wasn't a good night's sleep. Alex was awake at two, and when he wakes up, that's it. That's it for the night. He's just very gaggy when he wakes up, so he was coughing and gagging. He was going to wake up other kids and other counselors, so they moved him to where they do arts and crafts. They just dragged a mattress in there and someone slept in there with him.

I thought she was going to tell me to come and get him, but she said, “Oh, no! I'm just telling you what the set up is and asking if that's okay.” And I said, “Well, it is if it's okay with you folks,” and she said, “Yep! I'm just going to put this in his file so we know that this is what we need to do for Alex next year.” I mean, she was talking about next year already! This was just the first night, and it wasn't even a good night at all. The nurse came in at three in the morning—it was one of those situations. It wasn't good. But they made it good, if that makes sense. And it's funny, because when we went up there for the family night on Thursday, they said the counselors were fighting over who was going to sleep in there with Alex because it was actually more comfortable than the other areas where the counselors had to sleep. It was the craft house by day and the Alex Yozzo Private Sleeping Quarters by night, and they just totally made that work.

I was sent pictures and a daily blog of what he did every day, so it was awesome. And when we went up there for the family barbecue on Thursday, you could just see that Brenda and Marie were so much more comfortable. They had their own little system going on. They shared the different activities they did with Alex. I could tell by the pictures. You could tell Alex was—well, thankfully he smiles a lot. You know, he's a very happy, smiley kid. So you could tell that he was excited to see his family, but when it came to the skit part of the night, he was right there in it. He wasn't even looking at us. He was looking at the stage. It was really cool. Like, “Yeah, these are my new friends.” It was something that I hadn't seen in him before. He was totally into it. He was completely engaged in what was going on. There was no look of, “Gosh, you left me here. What's up with that?” He was just right in it. It was a complete tear-jerker situation, I can tell you that. Oh my god.

We had stayed overnight in a hotel really close by for pickup the next day, and I had actually asked if we could pick Alex up at nine instead of ten just so we could get a head start back to Eugene, and Amber actually said, “You know, this is our last bit of time with the campers, and it's when we give out their little certificates and have an award ceremony.” Basically it was a “Nope! See you at ten!” Haha so I was of course the first parent there at the gate the next morning, right? But it was their time! Of course I had to smile. 

Just the things they did were things Alex would never get a chance to do. They'd go fishing in that little pond. The picture that's up in his room is of him zip-lining. They had a line above and a line below so that someone was with him. One of his counselors—she looked petrified—was wearing a helmet and walking along like a tightrope walker, and here comes Alex in this giant net thing with a helmet, strapped in like he was going nowhere, and another guy strapped in behind him. They're going over the creek. It's just a fabulous picture. And he went up in something called The Squirrel. It's the same kind of setup, but he's 35 feet up in the air, like in the trees. By himself! They just pulled him right up there. Of course, we didn't know he would be doing all of these things until we got his pictures developed. It was like, “What's this up in the trees?” “That would be Alex!” I mean, it's just things that we would never even think to have him do. We didn't know it was possible! Honestly, it was just an incredible experience, really. It really was. Just amazing.

It's just the things the counselors kept up on. We sent a diary with him, but they made their own diary and they were really good about writing in it. They were apologizing, saying, “I'm sorry, I don't think we got a chance to write everything down.” But I wouldn't have known the difference. I wouldn't have thought anything was left out because it was so full of stuff. Campfires and hikes, and of course everything is wheelchair accessible. The setup was just awesome. I understand that the folks who set this up are experienced and have been doing this for many years, but you're still apprehensive until you go and actually experience it. Because you think, “Well how can they be ready for Alex?” But truly they were! And I'll still be nervous this year because Alex will be away from us, but he did so well that I know it's just my own problem to get over. Because he really did fabulously. I can't say enough good things. I've come back to Eugene and told teachers and aides and other parents that it was incredible. We've taken his pictures all over, made him a little collage to put up in his room, and told parents they should really look into this. And I can see the fear on their faces, exactly like what I had. But it is an incredible experience. He's all ready for next year. It's right after his birthday again.

Advice for future counselors:

Be open minded. I'm sure that people already know you need a lot of patience. Be ready for a ride! It's such a fulfilling experience. It's a humbling experience because you don't realize how fortunate you are you be able to just jump out of bed and dress yourself and take showers. Things we take for granted. The ADLs—activities of daily living. It's a routine for us, whereas so many others are not able to do that. Just be ready and open your hearts. You know, I truly believe that every day, Alex teaches at least one person something. It's going to be an amazing experience. 

And I would say thank you to everyone who volunteers to do this. Special needs kiddos don't have as many opportunities to go and do stuff like this. For some of these kiddos, this is the absolute funnest thing they look forward to all year. These five days might be the absolute five funnest of the whole year. It's a big deal for them, and when it's over, they'll be talking about next year. They're just looking to have fun, and they just need some help being safe along the way. So thank you. I'm excited this year. Alex showed me that I don't have have to be afraid to let him go.

Friday, May 2, 2014

Drawing Autism: Sharing an Experience

Earlier this week, I posted a link to a Brain Pickings article about the re-release of a book called Drawing Autism. It looked super cool, so I decided to explore it a little more and share my findings with all of you. Spring weather and art just seem to go together, don't they?

Three years ago, behavior analyst Jill Mullin put together the original version of Drawing Autism. An expanded edition was released last month. Although autism spectrum disorder still remains one of cognitive science's big mysteries, the range and extent of talents amongst people on the spectrum is becoming more well known. It seems, though, that a grasp on the emotional experience of living with ASD is more evasive. Enter art.

Art often proffers emotional understanding in a way that other media cannot. Its emotional nature and fluidity in meaning makes art, and therefore the experience behind and within it, extremely accessible. Like autism itself, art is spectral and individual, each piece entirely unique and subject to various reactions and effects.

The works in Drawing Autism not only celebrate the talent and self-expression of the artists but also serve as ways of sharing an experience that is difficult to understand. Couple the art with interviews with the artists, some famous and some unknown, and you've got a humbling and beautiful look into the emotional experiences of an oft misunderstood group of people.

Here are some pieces of art with snippets of interviews with their creators:

Donna Williams: 'The Outsider'  

What was the inspiration for this piece?
"The Outsider" is about joining in from the periphery. It's about being able to join because one has retained the right to also leave. It's about treading the boundaries between two worlds. I think it's universal. We have all been the outsider.

Josh Peddle: 'Changing Seasons' (2006, at age 12)

Do you think your art helps others understand how you view the world?
It feels weird when you have autism. I feel silly. It makes me sad thinking about it. People do not understand. Strangers cannot tell by looking at me that I have autism. If I am having trouble, they often want to tell my mom how I should behave. I wish I had more friends that liked me for who I am.

David Barth: 'Vogels' ['Birds' in Dutch] (2008, at age 10)

From an email from David's mother to Jill Mullen:
His drawings often represent his current obsessions. In the attachment I send you, it's not hard to guess what's keeping him busy right now. There are almost 400 birds on it and he knows the names and Latin names of most of them.

Emily L. Williams: 'They Take Away Your Razors, Your Shoelaces, & Your Belt'

What was the inspiration for this piece?
This is a small portion of a larger piece that's yet to be completed. The larger piece is one of three in a series, focusing symbolically on psychiatric units, utilizing Hell as an analogy. The demons in the piece were inspired by 12th century works depicting Hell and the Final Judgment. The piece was also inspired by some of my own hospital stays in the past. While I was never a suicide risk, I always found it odd that none of the patients could have any of the items listed in the title of this piece. I understood the logic and the risk to suicidal patients, but nevertheless still found it strange to be walking around in shoes with their tongues hanging out or to have unshaven legs.

Wil C. Kerner: 'Pals' [collage] (age 12)

What was the inspiration for this piece? [answered by grandmother]
The key in understanding Pals is the brown rimmed off-white donkey ear. Four facial expressions depict the bad boys turning into donkeys in the movie Pinocchio: purple-faced Pinocchio is stunned by his new ear and considering what to do; it's too late for the horrified yellow face; the green trapezoid is oblivious to his pending fate; the blue head is looking away hoping he's not included.

Eric Chen: 'Mirror Mind' poster #3 (2005)

What was the inspiration for the Mirror Mind posters?
I created these posters to commemorate and promote the launch of my self-published autism book,Mirror Mind. The book aims to convey the inner feelings I feel as a person with autism, and the pictures represent a poem from each book.

Neat, right? What do you guys think? Share your thoughts!