My mom and I went to OCALICON, which is a big autism conference in Columbus, a couple of weeks ago, and we had the best time. I got to hang out with my friends, and we both got to learn tons about autism. I went to sessions on alternative and augmentative communication, bullying, and even got to watch my two friends Chloe and Sondra speak about peer-to-peer mentoring. The best part was spending time with all of my friends who totally get me and allow me to be whoever and however I am in that moment. There are no requirements to engage in a certain way or to interact under certain rules. It’s fun to hang out with my peers but also to be able to ask questions of the older generation who have been where I am now and found ways to get through it and not just survive but really thrive. I learn a lot from the older Aspies… for example, when I listen to them, sometimes I learn the language I need to describe what I’m experiencing to my mom or whoever else I need to describe it to. Or, I learn systems that might help me to become more independent with certain skills. These conferences are autism-focused, but they allow me to be a person without having to comparmentalize myself. I feel like a WHOLE person at conferences, and it’s a neat feeling.
My birthday is Monday, December 9th; I’ll be 26. I am seriously gearing up! I start to get excited sometime in about July (August this year, but I was distracted!). We’re having a little family part on Sunday, and I have a Facebook “virtual party” with my friends. The vast majority of my friends are online, but I really do know all of them. Some, like Chloe, I’ve met in person, and she became one of my best friends. I wanted a chance to have fun and hang out with my friends, so I made an event online 🙂
Then, on the 18th, I’m having major surgery. They’ll remove my colon (about 5 feet of bowel), create an ileostomy, give me a j-tube (this is in addition to turning my GJ tube into a G), and I already have a port and an insulin pump. They may also do a muscle biopsy to try to get confirmation of mito, but I won’t know until I see genetics again, which is on my birthday. I’ll be in the hospital for about a week, so I’m praying I can make it home for Christmas. I know that, like many people, I have a tendency to slump into depression after major surgery, just from the trauma to my body… so, this time, I’m preparing myself. I am loading my arsenal of fun things, surprises, and activities… things like new movies, sparkly slippers, and, my personal favorite, is that I’m collecting cards in the mail so that I can open them all at once after surgery and have a burst of joy!
I’m posting my address in case you would like to send a card. Please feel free to share it!
St. John’s Specialty Care Center
500 Wittenberg Way PO Box 928
Mars, PA 16046
I really appreciate all the mail. I’m already super excited to open it with my mom. It’s making the days leading up to my surgery a lot easier for me! Thank you to each of you! I’d love to thank people individually but I haven’t opened the cards yet and many don’t have return addresses, so I can’t tell who sent them yet!
There are a lot of ways that autism will make surgery and recovery more difficult. One is that this is being done at a different hospital system, due to accusations of faking/intentionally creating my illnesses at the other major hospital system here. I didn’t feel comfortable when those accusations remained in my records. The new system may do things slightly differently low, and I am extremely routine-oriented. I also don’t do well when doctors walk in and expect to talk to a 26-year-old, at least, not what they think a 26-year-old will be like. Sometimes, I make social blunders, as in, hey, did you know doctors don’t like when you correct them about medical stuff? Yeah, that.
Other than that, I’m enjoying my last two weeks of school… looks like another 4.00 this semester, so I’m glad about that. The disabilities office is allowing me to use reading software and online text books next semester, because my eyes make it hard for me to read when I’m in energy crisis, and my muscles struggle to hold books up (if I have to read like 400 pages in 2 days or whatever). I’m also getting ready for CHRISTMAS! I adore Christmas, and I’m having a ton of fun making many of my gifts!
Please pray that my surgery and recovery go well and that my family is able to be together on Christmas! I look forward to getting beyond this so that I can get back to school (my semester starts January 7th, so I am really hoping I am able to start on time), writing, speaking, and generally being awesome 😉
Or something like that… ha.