Recently I got to do something really fun and interesting. My friend Kelsey is a professor at Pitt and she asked me to help her out with a project she was doing with her students.
I met Kelsey when I went to therapy at Children’s Hospital. Kelsey was my Occupational Therapist, so she helped me work on a lot of my physical limitations, including my fine motor control. One of the biggest things Kelsey helped me with was drinking out of a more age appropriate cup instead of a kids cup. I was really happy to move on from those because still using sippy cups at age 16-17 was definitely embarrassing.
Now Kelsey teaches an Occupational Therapy class at Pitt and asked me to help her out with a project she was doing. When Kelsey first asked I was immediately excited and eager to find out more, but also nervous because I didn’t know what I would be doing or what to expect. Kelsey and I met up via Zoom (which was how I was meeting with her students as well) to talk about the project and my role in it. A couple days before we met on Zoom, she emailed me a list of questions she wanted me to answer. The questions were general questions about my life and OT experiences. In preparation for my Zoom meetings with her students, I wrote up my answers to her questions and pre-programmed them into my dynavox. Doing this enables me to be more independent by not having to rely on my mom to interpret for me. Kelsey video taped our conversation, including my answers to her questions, for the students to watch so they could get to know me before we met.
A couple days before my Zoom calls with her classes, Kelsey sent me questions that the students had come up with. The questions were about specifics of my life and OT experiences so they could decide on what challenges were best to focus on for their project. Like I did with Kelsey’s questions before, I wrote up answers and pre-programmed them into my dynavox. On the day of the first class meeting I was a little nervous and didn’t know what to expect. But I was also really excited to meet all of the students. When I signed into Zoom Kelsey was there along with some of her teaching assistants. They were very nice and I’m glad I got to meet them. Slowly the students started coming into the meeting. Each zoom meeting I had consisted of 4 groups of students and each group had about 8-10 students who were working on the project together. Kelsey’s classes are on Tuesday and Thursday, so I had 2 Zoom calls, one on each day.
During the call, the students went around taking turns asking me their questions. Most of their questions were the ones Kelsey had sent before, so I had the answers preprogrammed in my dynavox and ready to go. However, some students asked follow up questions or had new questions they had thought of. In that case, I simply spoke the answers and my mom was in the wings to translate for me. After the last student asked their question the students went into another Zoom room to discuss what they learned and their plan for me. The students’ assignment was to come up with what we call an ”intervention plan” for me if I were to go back to OT. An intervention plan is when a therapist or a doctor sets goals for you to work towards while in therapy or rehab. For me, these would be OT or PT related, AKA fine motor control (hands) and gross motor control (walking). The groups asked their questions one at a time, and after the first group I felt a little bit more comfortable. That meant one group down, and 7 to go!
I really enjoyed talking with the students and they had some really good ideas. I thought I would share some of the things we talked about with you.
Wallet/debit card
One of the biggest things I have been working on in OT the past year is how to get my wallet out of my purse and my debit card out of my wallet. My OT from school has been helping me work on this issue. We solved the first part of how to get my wallet out of my purse by putting a keychain on my wallet. This makes it easier to get my wallet out because it is easier for me to grip a keychain, which is something I can grab with my whole hand, than a wallet. I haven’t solved the second part of this issue, which is to get my card out of my wallet. The students had some good suggestions to help me with this.
One of the groups suggested I get two strips of Velcro and put one on my wallet and one on my card so I can simply velcro my card to my wallet instead of putting it in one of the slots. This would allow me easier access to my card without having the struggle of pulling it out of one of the slots. I think this is a very well thought out idea that could work in my favor.
Another idea that the students had to help me with this problem is Apple Pay. If you don’t know what Apple Pay is, it is an app you can get on your phone or your Apple Watch that you can use to pay with instead of a physical credit or debit card . I don’t have an Apple Watch but my mom was looking into getting me one to better monitor my diabetes, so I think this could be a reasonable solution. The only thing with getting an Apple Watch is I’m not sure if the buttons on the touch screen would be too small for me.
Overall I think the students had some really great ideas to help me have more independence when it comes to shopping out in the community.
Dynavox
Some of the students wanted to see my dynavox and how it works. If you’ve been wondering this whole time what a dynavox is, it is a speaking device. You can choose different “voices” that will speak what you wrote, and you can type directly in the device or bring stuff into it that you have already written.
Although the students didn’t have any feedback I think they enjoyed seeing me work with my dynavox. Some of them were asking how I program long responses. When I have to program a long response I will type my answer into the pages or notes apps on my phone first, then I copy and paste my answer into the dynavox app I have on my iPad. The dynavox app is not that easy to work with, it’s really hard to type directly in the app, so to avoid frustration that’s my method.
In high school I had a completely separate device as my dynavox that looked similar to an iPad. But when I came to City Connections they helped me get the app version so I would only have to work with one device at a time. When I was in high school I didn’t really use my dynavox that much because I was around the same people who got used to the way I talk and for the most part understood me. When I came to City Connections, I had to use it more to get my point across, especially in the community, as for the first time in a long time I was around new people. At first I was getting really frustrated using my dynavox because it took me so long to type what I wanted to say and I wasn’t that familiar with the way the dynavox was set up and the topics and phrases that were programmed already. I had days when I would come home from school and just cry because I was so frustrated. But after I worked on it a little more I got more comfortable.
I think I’ve come a long way with my dynavox, but I still have a ways to go. I’m excited to keep getting familiar with my dynavox and keep working on my speech independence.
My art
As most of you art is one of my favorite hobbies; I really like to paint. Most of my paintings are abstract and I do really like doing an abstract style. I use colors and patterns that speak to me; I enjoy creating pieces that are meaningful to me. I also love using bright and vibrant colors. I think I’m really good at creating pretty pieces with lots of colors. If you haven’t checked out the Art page I have on this website, you should definitely do so.
Although I really love abstract art I would like to be able to paint a more structured and realistic styled picture. I told the students that and they came up with some ideas to help me realize this goal. One of the groups suggested doing a paint by numbers. In theory that sounds like a good idea, but I’m not how well that would work for me. I feel like I didn’t have enough motor skills to stay within the lines, and it would just end up as another abstract painting.
Another groups suggestion was that I have someone draw lines and I try to trace them. I thought this idea was really creative and well thought out. I definitely think I would have to do it a couple times and work on it before I would be able to do it. But if I did it enough I think I could get the hang of it .
I think the students had some really great ideas to help me with my art and being more independent with it.
I have been taking a zoom art class on Tuesdays, which includes a lot of drawing. I’m not that good at drawing because of my lack of control in my hands. Despite that I’m really happy I get to take this class and I’m ready to see what I can do with a little more practice. I think implementing the tracing lines suggestion could help me improve my skills for this class.
Art is something that I really enjoy doing and I’m excited to keep working on my skills.
Feeding
I haven’t really talked about this subject that much in my blog. Some of the students were asking what eating looks like for me. I need a lot of help when it comes to feeding myself. The food has to be cut up in small bites and the person who is feeding me has to make sure they put the food directly on my teeth because I don’t have much control in my tongue to push it over to my teeth myself.
Although eating is a challenge for me, I am glad that I can eat by mouth instead of being on a feeding tube. My mom told me that when I was first born and in the NICU (Neonatal Intensive Care Unit) I was on a feeding tube. She also told me that one of the nurses that worked there helped her feed me a bottle by mouth for the first time. I guess that’s when my love for food began. I’m very grateful that I can eat by mouth and consume the yummy thing we call food.
I’m really glad Kelsey asked me to help out with this project. I enjoyed talking about my life with the students and hearing their ideas. I thought they had some really good suggestions that could help improve my quality of life. Thank you Kelsey for letting me be a part of this project, and all the students for being so insightful with your ideas. I wish you all the best with your futures in OT!
I wanted to end this blog by saying thank you to all my subscribers. Your support and love means the world to me. When I started my first blog in 2016 it was a really small blog that didn’t have much character. I wanted to make my website more professional and try to reach people outside of just my friends and family. So about a year ago my sister helped me make this new one. My mission with this website is to prove that even though people with disabilities definitely have some challenges they can still live a great fulfilling life. I really appreciate everyone who takes the time to read about my life and see the world from my perspective.
To be honest with you guys having so many challenges to life is something I struggle with sometimes. The fact that I can’t do as much as an able bodied person has been really hard for me. On the inside I’m just like everyone else, but on the outside I know I’m not. I want to get to a point of acceptance within myself and not compare my life to others because I know I’ll be happier. It’s just something I have to work on.
On a brighter note another cool thing about this blog is I’ve come into contact with people who have similar stories to mine. It’s really nice to be able to communicate with people who are going through the same thing and have similar feelings to me.
I’m really glad I get to share my thoughts, feelings and ideas with you guys. Thank you again for all the support. I hope you continue to enjoy my blogs!
