Questions and Answers

On the day after we got back from Colorado, I pulled some weeds and the mowed the lawn.  Then I went to Starbuck’s and read (reread) where I left off in Water Touching Stone.  I also e-mailed Elizabeth to ask her if she could give me a ride to the Camp Encourage panel in Lawrence.  Dave’s brother-in-law Kent came to see us who he was staying with while in town for his Skills USA, and we all had dinner.  I was also asked over Facebook by Elise Johnson Chaplain from Horizon to answer some questions on Buddhism for a class she’s teaching for her MSW, which was due on Friday, which I gladly agreed to do.  I also got a call from Jack inviting me to see Shakespeare in the Park on Saturday, which I agreed to do.  In a week we would also be going to New Hampshire to see my mom’s family, and I would get up on Friday to catch a plane at 4:50.

                The next day I got an e-mail from Elizabeth saying she was rather swamped but telling me that she could come pick me up on Wednesday morning and take me to camp to volunteer with her at camp that day, then to stay at an apartment of a friend of hers, where we would sleep on couches, go to camp and volunteer the next morning before the panel, and afterwards go to her Bible study in Lawrence before going back to the apartment, and going home the next morning.  I of course agreed and e-mailed Mrs. Johnson to tell her I would need the questions by today or tomorrow to do them in time.  The next morning I pulled several acorn trees and later I went to Starbuck’s.  Later I answered the questions on Buddhism for Mrs. Chaplain and e-mailed them to her.  I also talked to Tyler.

                The next morning Elizabeth picked me up and told me one of her favorite shows Switched at Birth took place in Mission Hills.  I went with Elizabeth to pick up her friend Angela, who I met and found to be very nice, as Elizabeth said.  We went to Camp Encourage, where I helped a few kids from one group of campers make stress balls, and then another group with making slime.  Then I switched to helping the next group of kids make stress balls and then slime.  During that time I got to meet Kelly, who was in charge of the camp as well as a young blonde counselor Cassidy.  After the last group of kids had left, Elizabeth, Angela, and I cleaned up the mess.  Afterwards we all ate dinner together and then we went to the LLC Room where we sat in a circle, accompanied by two interactive musicians and kids played with maracas, tambourines, and percussion instruments and we sang Red by Taylor Swift, Baby by Justin Bieber, God Bless My Underwear, and Baby Shark.  Afterwards I had smores with several campers where I saw Matt who worked with Sean and I at the JCCC Autism Spectrum Support Group and who I got caught up on my recent activity.  Afterwards, a small camper, no more than ten years old, came to me “Do you have autism?”

              “Yes.”  I said.

“What do you do about your autism?”

“Well I’ve had help when I was younger and it helps me live my life.”

“Do you still have autism?”

             “Yes.”  I said.

“What will happen when I grow up?”

“Well, when I was younger I found the right supports and that helped me navigate in my life.”

“Are you ever gonna get married?”

“I hope so.”  I said.

He asked me these questions some again, and I gave him the same answer.  Then told me that when he grew up he wanted to teach kids with severe autism, and as Angela and I cleaned up the instruments and a counselor beckoned him to leave, he said, “Nice to meet you.”  Elizabeth and I then dropped Angela off back at her house and then we got a bite to eat at Shake and Steak where I insisted on paying for her meal to reimburse her for her gas money, and after making my case several times, she accepted that.  We got back and we saw Switched at Birth.

The next day we got breakfast and then helped set up the tie-dye work station, where I helped one kid make a tie-dye t-shirt, then dyed one for another kid who was allergic to dye, and then helped the next two groups.  Later Elizabeth and I got together outside the LLC room before the panel and found a young man sitting on one of the couches.

“Hi, I’m Nathan.”  He said.

                Elizabeth and I introduced ourselves and then at 2:30 we went in and I anxiously readied myself for the panel.  Finally, the first group, accompanied by Kelly and a young dark-haired neurotypical girl came in.  After being asked, “how do I define autism,” I was asked, “What has been the biggest challenge in your life?”

                I said, “Even though I have the social skills to have successful interaction with people, whenever I meet people, friends, romantic interests, I often wonder if they will be mature enough to understand what I’ve been through, what I’ve had to do, and how I’ve had to grow up at an early age because of my life with autism.”

                At this Kelly was in tears and the young counselor teared up as well.  As the next group came in, I told them about how people in my life have not always been able to truly understand myself as an autistic person or my struggle and I said, “One girl, who once* had a romantic interest in me seemed to try and show she was just like me by saying on Twitter how she loved getting movies on Netflix.  I’m thinking ‘that’s not an autistic thing!’  You can’t even get your stereotypes right!”

                Everyone laughed.

                The next group came in and I told them, “Sometimes I would like a girl while not knowing how she felt about me, and therapists would say, ‘you just don’t understand non-verbal social cues,’ and that was a real oversimplification of it.  Several kids nodded in agreement and said, “I know just what you mean,” and, “I’ve had the same thing happen to me.”  Afterwards one girl at the camp said to me, “Thank you!”

The next group came in and I told them how when I was in school, despite being segregated in a special classroom, I felt that there was no help for me in school until my last days of sixth grade.  Afterwards, a woman approached me, saying she was a special education teacher, and asked how I felt there could have been more help for me.  I told her it would have been good if my school had better methods for behavioral correction, more ways for me to be a part of my school, and had helped me as I had bullies.

                After the last panel, the kid I had met last night came up to me and asked for my contacts so I could talk to him outside of camp, and I gave him my home and cell number and e-mail address.  Elizabeth and I went to dinner and a young kid greeted me from behind.  When he was out of earshot, Elizabeth whispered to me, “I think you’ve got a new admirer.”

                As Elizabeth and I were about to go to her Bible study, I said goodbye to Kelly and she thanked me for coming, saying I was so inspiring to the kids and would love for me to come back as a board member of the camp or a counselor to help see that things were going right.  I thanked Erin for letting us use her apartment and said goodbye to her.  I said goodbye to Cassidy and went up to the young kid who I talked to the last night and said goodbye to him and wished him luck on and gave him and vote of confidence for teaching children with severe autism.  Elizabeth and I then went to her Bible study and I met several friends of hers including Joey, Lydia, and Bethany.  We discussed a book called the story of Bethany, and it was quite illuminating.  Joey eventually said, “People are saying that we can’t help the people who are coming to this country because of limited resources and that it’s a political issue.  I think, no, it’s a Jesus issue.  I feel if Jesus was alive today, he would have fed these people.

                Afterwards we walked down to a Mexican restaurant, during which I learned Joey was graduating KU with a degree in Latin American studies, and later planned to work in Mexico.  At the restaurant, where I ordered a beer and a churro, after I found out they were out of fried ice cream, I told Joey about Lonely Planet, how it’s authors research hotels, sights, and restaurants there, and how he might enjoy that if he’s going down to Mexico, as many of its authors do that in junction with other work, such as one author who did a chapter on Mauritania while down there to research the accidental shooting of the president.  He liked that idea and as we were about to walk back to the church, he gave me his phone to send me a friend request through his Facebook page.  As we got to Elizabeth’s car, I suggested we come there other nights and she thought that was a good idea.  We got back to the apartment and watched more Switched at Birth before falling asleep.  We stopped by the McDonald’s drive-through and I paid for the two of us again to reimburse her for her gas money.  Afterwards I went to work and the next day Jack, his dad and I went to Shakespeare in the Park, where I got a Shakespeare Festival 2014 A Winter’s Tale button for my donation.  We sat in lawn chairs, enjoying beers, wings, ribs, baguette, and cheese, and for three tickets, one dollar per ticket, I enjoyed a fried Snicker’s bar, while we watched A Winter’s Tale.  Afterwards Jack’s dad asked me if I wanted to see this bench in the park erected in honor of Jack’s mom and I told him certainly.  We saw it before he drove me home and I got what little sleep I could before I would wake up for the airport the next morning.

*Stay tuned.  A link will soon be available to a transcript of my interview on my other blog www.autistdharma.com. 

Freedom of the Open Road

On the first day after I got my driver’s license, I drove to my art class, withstanding the torrents of rain that I had not yet practiced, and to work, where I again got another USDA cap. I also talked to my granddad, telling him the news of my driver’s test, of which he was really excited. The next day, with no more errands to run for my mom not that I had my license, pulled a lot of acorn trees and weeds, spread some mulch over my mom’s garden, put cushions on the outdoor seats, and moved some bricks to the pile in near the back fence for Mom. Then I had an idea to turn Tyler’s bottle caps into a sign saying “Jesus,” and I talked to Tyler, who loved the idea, before I watched Regular Show. After that I went into the Prairie Village shopping center where I got a new bottle cap for my collection from my drink at Better Cheddar. Afterwards I mowed the lawn, and then I got two more bottle caps from my drinks at Better Cheddar while I found out about some great places to shop in my Lonely Planet Turkey book, including a shop where unemployed women make handbags and jewelry from recycled material. In one week, we would go to our vacation home in Leadville, Colorado. 

The next day I had lunch with Cam, Nora, and my dad, and I made a heart-shaped pin from the straws there. I got back and I went to Starbuck’s. Then I made another coaster from receipts. The next day I pulled some more acorn tree for Mom. After that I went to the small Hen House and got a People Magazine special issue on Michael Jackson, who was said to have autism. Then I went to Starbuck’s before I got back and worked on my Lord of the Rings card boxes. The next day I went to Starbuck’s and talked to Tyler on my way back before driving down to work. When I got back, I talked to Tyler some more. The next day I cleaned out my minifridge where I found my last Smirnoff and took a shelf from the garage down to the basement as well as my stuff for school to put on it, and I took my school bookshelf downstairs and put all my plastic bottle caps there. Then I emptied the dishwasher before I went down to Better Cheddar and got a new bottle cap from my drink. I went to Hen House and got a National Geographic issue on famous women in history, and then I went to Starbuck’s. Later I drove down to Elsa’s Ethiopian Restaurant, which I was very comfortable going to, and ate there with Mom and Dave, who came there from their yoga class. On Wednesday I also got a Facebook message from Elizabeth saying she was volunteering at a youth camp for people on the spectrum and served on a panel of adults on the spectrum to help answer questions for the kids, and a good friend of hers asked if she knew anyone who would be good for serving on the panel and she told her about me and asked me if she could introduce me through e-mail, which I said she could. I did my usual drink at Better Cheddar, from which I got a new bottle cap, and going to Starbuck’s. I got back and later I went to Winstead’s with Granddad. Then we went to Barnes and Noble where I got the Lonely Planet guide to Istanbul and a songwriter’s journal. After that we went to the Pathless Land where I meditated and realized I find the same block with seeing old friends that I did with driving, which is trying to get my mind off my “special interests” long enough. When that was over we went to Roasterie in Brookside. The next day I worked on my snack wrapper collages before going to work and then getting back and packing up to get up the next morning to go to our vacation home in Leadville, Colorado.

     

Spring Break 2014

I saw an e-mail about how condolences for the loss can be sent to the address of the ASA president Ellen Whit, whose name I recognized from the Friend of Autism Pledge, and I decided to send her an e-mail after break saying I recognized her name in the e-mail from the pledge and wanted to wish my condolences to her. I put up a Facebook post that said, “Three types of girls I will never date:/-Girls who don’t wear their seatbelts, or ride with people who do/-Girls who smoke/-Girls who support autism organizations that pay more to their executives than supporting individuals and families/All three of those thing could cut my time short with her.” I saw Dr. Downing, Jamie, Kurt, Britney, and one other person liked it. I also wrote “Three of the worst things you can do while driving:/-drink/-text/-support charities that don’t pay most of their money to the causes they claim to represent/When you do any of these things your car can kill.” Brittany liked that. I shared a link to Hook’s obituary on Ryan, Philip’s, Hillary’s, and Mardy’s page and saw that they liked it, and Hillary liked my comment on her page about how I reacted to these girls' deaths.  Brittany also liked several other things on my page. I shared a link about the vigil on THRIVE’s Facebook page, commenting on what the girls did for THRIVE and how I thought the link deserved to be on there, and Dr. Downing approved. I shared a Buddhist link with people at the Pathless Land, and several of them, including Steve, liked it, and Steve said, “Awesome Ben Edwards.” I realized I can reach out to and gain respect of people like that. I talked to Tyler who said he knew of the girl’s deaths and knew one of the girls. I realized there are times when college students lose their lies like this, like the fall semester before last, when a twenty-three-year-old UCM male student died in a car wreck not wearing his seatbelt, from seeing it in the Muleskinner while working there.

The next morning I felt pretty good though a little frustrated as I had a nosebleed while I had just undressed to take a shower and Dad texted me to call him and I wanted to call Elizabeth to make plans for tomorrow, but I called Dad, and I called Elizabeth and she offered to pick me up and take me to Panera tomorrow, which I accepted as I was feeling still quite overwhelmed by the loss of the girls. When Elizabeth pulled up in my driveway however, we ended up going to Minsky’s in downtown Prairie Village instead of Panera. Elizabeth and I started getting caught up on each other’s lives and she told me there was an Autistic Self-Advocacy Network chapter opening up in Kansas City. I started telling her about the group and she was excited to hear that it was getting ready and understood that it was taking a while to get off the ground.

“The thing about the autism community is that we’ve always sought friendship,” she also told me, “I’m your friend in the autism community.”

Finally, I also told her about the loss of Hook and Reeder.

“I’m sorry,” she said, very sincerely.

“It’s just, sometimes I still feel some pain, but then it just subsides.”

“That’s called grief and it’s perfectly natural. It means something was important to you.” 

I smiled. Elizabeth was being very empathetic just as I had expected she would.

“These kind of things just seem to happen, and I guess, ultimately, there’s really no point in trying to figure out why.”

Elizabeth looked at me with such kind eyes. Eventually we got off the subject of Hook and Reeder, which was really a relief to me. She asked me about my bottle cap necklace, and I told her about it and showed her my belt made from plastic bags. She looked amazed.

“It’s really strong,” I said.

“I believe you!"

I learned her brother had had cancer for the last year, although she did tell me not to make any negative assumption about it too quickly as she said he was getting better. She also gave me a business card for her work as a music therapist, which she had recently been licensed to do after finishing her practicum for it last year. As I got out of her car and said goodbye, I realized I truly did have one friend in the autism community.

Later that day I went with my dad to our family house at Lake Lotawana where I indeed also found twenty-three new pebbles near our garden. Then we went to have a beer at the Canoe Club while we waited for my grandparents to come and eat with us. In the meantime, he asked what I planned to do after college. I mentioned selling some environmental crafts on Etsy, being a drama teacher at Horizon, and maybe publishing a book on my experiences at UCM and other parts of my life, before, hopefully, getting a career in filmmaking. He thought those were all good ideas. Then he asked me, “Ben, have you ever thought of having a career as an autism specialist? It’s just that none of the autism specialists I’ve ever known of have had autism.”

“I don’t know," I said. "I mean I thought either way I would do some stuff involving autism.” 

Soon my grandparents arrived. My granddad started telling us about how Bob from the Pathless Land was told by his doctor that he absolutely needed to quit smoking. He had “had his last smoke” with my granddad, though there had been slips since then. I had hoped he would quit as he was a great man who I had known for the last two years at the Pathless Land. 

The next day I drove to my appointment with Dr. Mays, then to the post office, and then home getting twenty-five more minutes of driving. I made twelve more flowers, seven more heart-shaped pins, a rose, and then seventeen more heart-shaped pins from straws, and decided to use the heart-shaped pins in making prints. I went to Better Cheddar and got two new bottle caps for my collection and drank the drinks while I ate a Mars Bar and read Mckinsey’s blog post on world hunger statistics, which I commented on favorably. I went to the hardware store and got a saw to cut my board at school apart and some wood to cut into rectangles for wood burning. I then cut apart the board and turned that coaster project Mom started into two coasters, which she was pretty impressed by. I also got the idea for when I find “a one” to glue the letters of my old computers to two of those boards and give each of us one of them on our anniversary where we can write a word or phrase next to each other about how we feel about each other. I drove to Bella Napoli, getting ten more minutes of driving. There I also got a new bottle cap from my beer. I also realized how interesting it is that I drink two sodas and eat a Mars Bar while reading a post on world hunger statistics. 

The next day I called Jack and left a message to see if he could sleep over with Tyler and I this spring break. Afterwards I grinded up leaves and spread them in my mom’s garden for fifteen dollars an hour for three hours. I also felt comforted knowing Elizabeth could understand how I felt about those girls. I made one of my coasters for Aunt Laura from receipts. I went down to Better Cheddar and got two new bottle caps for my collection from my drinks. On my way back I picked up and sorted some recyclables. On my way back I found a good walking stick to carve. I also worked on my coasters made from paper plates and Styrofoam.

I was able to slow down and take a breath while I enjoyed some Welsh rarebit for dinner tonight. I then talked to Jack who said he couldn’t sleep over this spring break because he has a lot going on, but he did say he could do it over the summer. I also told him about the girls, which he was shocked about, but glad I told him about, and about how Emily and I broke up. I talked to Dad and he and I agreed to eat dinner together tomorrow night and I sent him the links to my blogs. I wrote another post Autism and Olympics: Not So Special After All and posted it. I also saw another one of my Facebook friends accepted my invitations to like Tania Marshall and Little People of America. I remembered how great it feels to wake up and get a text asking saying, “I love you.”

The next day I realized more of how I would organize my stamp collection before I went to BRGR with Dad and he gave me dozens of bottle caps, which I found five new ones in, two Buddhist magazines, which I already had but could make some DIY colleges with, and a craft board. The next day I drove to get my blood tested and got ten minutes of driving on the way, then to a garden shop, then Dunkin Donuts, where I had a jelly donut, then Bruce Smith, and then the hardware store, getting another twenty minutes of driving. Afterwards I got two new bottle caps from my drinks at Better Cheddar. I also got some bread and turkey at Hen House along with the current issue of National Geographic. I arranged to get together with Erin tomorrow at eleven, and then I wrote in my dream journal. I also made another rose from straws. Tyler got here and I gave him those bottle caps I’d saved for him. We ate burgers and fries and then watched Epic. 

The next day Tyler met Erin before she and I went to the Cheesecake Factory, and I gave her presents and she gave me mine: a book called Empires of the Silk Road: A History of Central Eurasia from the Bronze Age to the Present. I got home and then went to my dentist appointment. I got back and rested from the cavity filling. I also agreed to go with Mom and her family to New Hampshire over the fourth of July, as I don’t see her family very often. I swung in our backyard while I read a lot of Erin’s book. Later I got Tyler to resend the link to the Down Syndrome Dance form when I couldn’t get to the page via the link I was sent. 

The next morning, I worked on my revised research paper for my Early American Literature class. I moved some soil, mulch, and compost into my mom’s new garden bed, during which time I realized that Beorn attacking the dwarves as a bear in the second Hobbit movie was a good idea as that way the audience gets the see Beorn as a bear before the third movie comes out, and Beorn being at Dol Guldur doesn’t seem like such a bad idea as Beorn was close to Radagast, who was a member of the White Council, and lived near there. Later I saw some good miksang photos and got inspired to take some more, which I did. I saw that the Autism Women’s Network liked my review of them before I took another photo. I also got together some bottle caps for my rainbow fish wall fish.