(31. Morning Stretch) After starting my Polaroid project in early June of 2022, it wasn't until October when I moved back and got this first picture of Jon. He's showing off his flexibility, which I've always been fascinated by (and is at least partly due to low muscle tone, common in people with Down Syndrome, which is good to know!). As kids, I would often walk in the living room and see him sitting on the couch with his foot behind his head! That'd hospitalize me!
(33. Donut Monster) Jon and I have always loved going on fall adventures and one of our favorite places to stop is E.Z. Orchards! I had already started working with him on nutrition and exercise following his weight gain while I was in California, but in the name of balance and fall vibes, we got an apple cider donut. Fun Fact: This was the first picture in my whole project that somebody else named!
(35. Harry Handles Halloween) Watching your younger siblings grow up is a really interesting and beautiful experience. After spending our childhood trick or treating together for many years, Jon had already transitioned to handing out the candy for a few years before this. But once I got back and had started this Polaroid project, I knew this moment and feeling was worth including. Plus I absolutely adore alliteration.
(36. Sorry Belly...) During my time in CA, Jon gained a lot of weight. He took Miralax daily for constipation and spent most of his days on the floor, watching movies (his favorite activity). When I got back, I knew I could help. There was a treadmill conveniently at the house so I got Jon some headphones, a fan, and set him up at a 5.0 incline at 2.5 speed. 30 minutes would gain two stickers while 15 minutes would gain one. He spent much of the day, FULLY bought in, singing "sorry belly, time to get back in shaaaape".
(37. Jon Awesome) Sticker charts are a great tool for positive behavior change, as long as they are used correctly. For Jon, these have been used for many years, to varying consistency and effectiveness, mostly to encourage him to use his CPAP machine. You offer an immediate, tangible reward for a behavior you'd like to see with the eventual promise of a reward that is meaningful to the person. For Jon, that's DVDs. He finished his first chart in 14 days, walking for 30 mins every day. A great $25 investment!
(40. Close Call) Living with Jon has presented all kinds of ups and downs, as you may expect. One particular afternoon when we were kids, I came home and, having gone in my room, Jon accidentally knocked an old school desk lamp over, leaving the light facing straight into the carpet indefinitely. I came home to a hole burned into my carpet, almost down to the wood, very lucky a fire didn't start. The sports rug I used to cover it was still in there all these years later!
(41. Headless Jessie) In the spirit of capturing aspects of my childhood, I knew I needed a picture of Headless Jessie. Jon has always been a bit of a collector/hoarder. He keeps everything. That came in handy when I looked in his drawer and found this. Jon's first MAJOR love of movies came from Toy Story. All his toys and gifts revolved around it and he would carry them everywhere. This even included a Jessie toy, even after she lost her head. This was an early insight on the looks you get in Walmart.
(44. 5 Diet Cokes) After spending a day unsuccessfully trying to stage a Polaroid for Jon to take, we decided to let the moment come. The next night, as I'm helping Jon pack for grandma's, I grab his backpack. The energy immediately changes and it's clear he's hiding something. After initially refusing, and a little reassurance, he reluctantly agrees to open it. Inside are 5 Diet Cokes. We both die laughing and he takes this photo. It's one of my absolute favorites!
(57. George) Jon had a large cyst on his back that was eventually removed in a surgery that was more significant than expected and had a profound impact on his life, as well as everyone around him. On this day, he returned from an appt with a wound vac that needed to be attached 24/7. I was tasked with managing the initial emotions of this. I noticed that he kept calling it his "machine", which felt terrible. I decided to have Jon name it so instead we'd say "Make sure you grab George!", the name he picked out.
(58. Already Too Late) George made it so Jon was not able to help the Salem Capitals basketball team in the way he had been. This was a bummer but we still enjoyed watching many of their games. After this particular one, Jon was out getting signatures (as he usually does). I walked up to him and noticed the mascot was signing George, the machine we'd eventually send back. It was Already Too Late, so instead of trying to stop it, I snapped this photo.
(59. No More George) Jon and I went to this appointment with no expectation that he would be done with George. We assumed it would be at least another week so I left my Polaroid camera at home. When they gave us the GREAT news that he could be done with it, I still wanted to capture the moment. We both walked out singing "No More George". I took the photo on my phone and used the Polaroid Lab to convert it. It's the only one in my whole project that is like that but is a moment neither of us will soon forget.
(68. Bob's Burgers) I read a line once many years ago that said "we are all mosaics of everyone we've ever loved". I think that's beautiful. Showing things to people and having them enjoy it, sharing experiences, and sometimes even adopting them as our own, is a lovely part of the human experience and of our nature. It helps me to remember that in moments of frustration or cynicism. Jon had never seen Bob's Burgers. We spent most of this day watching it and I captured this simple, lovely moment.
(70. Tony Loaf) Jon doesn't drink alcohol very often for several reasons. Neither do I. However, he is an adult and has always loved the idea of growing up and becoming an adult. On this particular night, we were having pizza and I thought a Not Your Father's Root Beer would go perfectly with it. I gave one to Jon and as he was taking a drink, one of our favorite lines in The Incredibles happened. Dash says about his Tony Rydinger-smitten sister Violet, "She'd eat if we were having Tony Loaf".
(82. Power of Pizza) During recovery from back surgery, Jon was VERY sensitive about certain movements. This was clear to anybody who was around him and, at some point, became more emotional than an actual physical limitation. I encouraged him to stretch and move around with hopes he would see how okay he was on the other side. On this particular day, I held a piece of pizza up as high as I could and, after a couple minutes of struggle, he reached it. The problem wasn't solved, but it was a step in the right direction.
(84. Pee on the Cereal) When I was a kid, my mom put a cheerio in the toilet to give me something to aim at. It seems primitive but it worked great. In Amsterdam, they have a similar system where the urinals have flies in them for men to aim at, which drastically reduced the overall cleaning costs. After another instance where Jon had missed the mark, I decided to implement the same strategy. It was a silly way to work on a necessary skill, and it worked great. It's also one of our favorite Polaroid names to say.
(87. Reinforcement) At a training I went to with some of the RISE folks, the trainer casually used the word "reinforcement" to describe an aspect of behavior change. Immediately, two attendees raised their hand and took issue with the use of this word, which I found interesting. The trainer asked for an alternative and they didn't really have one. A couple days later, a trainer at Wildlife Safari described the exact same premise when explaining how they use fruit, for example, as reinforcement when they work with elephants.
(92. Physical Therapy) As a DSP, we do many different jobs depending on the day and the person we work with. During this time, helping Jon through his recovery became a big part of my job. After Power of Pizza, I recognized the value of taking silly, sometimes common tasks, and making them into something that would help in a bigger way. In this photo, Jon is shaking a couple water bottles to mix in the flavor packets but is doing so above his head, which was the main movement he struggled with at the time.
(98. Happy Dance) Communication has always been a key element of Jon's life experience. His speech and pronunciations have improved greatly over the years which has contributed a ton to his improvement in behaviors and overall quality of life. It's something we work on a TON. On this particular day, I noticed that anytime he got a word right, especially after working on it for awhile, he would do this very simple and silly dance. It became known as his Happy Dance and is even better in person.