Please enjoy this story about how the success of an unlikely caregiver made for an amazing summer experience for everyone involved. There are Planning Pointers at the end of the story to help parents on their own journey.
Susan, James' Mom
When an invitation arrived from one of our very favorite people, our Polish exchange student Karolina, my husband John and I wanted to figure out how we could travel to Warsaw to celebrate her nuptials with her. Planning a getaway and care for our son James, no matter the length of time, is always a logistical challenge and a complicated process in our house. The addition of Covid and no day program (with none in sight) for James made a difficult situation even harder.
Thinking creatively was key. Our son, Ben, and daughter, Alex, wouldn’t be available as they both work full time, so we needed care during the day. My mind immediately jumped to John’s brother, Ed.
John was at first reluctant to consider Ed , as he viewed asking Ed to care for James as an imposition and didn’t want to make him feel uncomfortable. James is an adult, and mostly nonverbal, and his care requires three square meals, medication, patience with the boundary testing he would most likely provoke and assistance/cueing with his hygiene and bedtime routine. Ed is retired and had spent six weeks with us the previous summer, which we all enjoyed. He checked the important boxes of having time and he loving his nephew. Although Ed has plenty of talents, we weren’t sure if caring for someone else was one of them. Previously, this was not part of Ed’s perceived repertoire of skills - or so he thought.
Given our limited – make that non-existent – alternatives, she figured no harm, no foul and picked up the phone to call him.
Ed, James' Uncle
I actually thought Susan was joking when she asked me if I would watch James. I hadn’t cared for anyone for more than an afternoon in over 25 years! At first, I didn’t respond to her request. However, the thought of spending time with James became less daunting the more I thought about it, to the point where I told John I’d do it. From previous encounters, I already knew that James is a hoot! We’d have a good time while John and Susan went overseas for a brief vacation.
I went to their home in Gloucester a few days before they were planning to leave for some “basic training.” Preparing the meals, remembering his meds and sticking to his schedule were easy since I like to cook and James always enjoys everything on his plate. The nighttime routine of showering, shaving and tooth brushing was a different story. This is my brother’s “alone time” with James. John's practice was to drive the process while James went along for the ride. After getting Susan’s nod of approval, I decided to do a few things differently by making James take a more active role. I thought, "Let the fun begin!"
The first night was rough, a battle of wits! James is really intuitive. He can read a situation very well and apparently saw me as a push over. Normally James is told to “wrap it up” and he marches upstairs without delay. With me, that alone took us 15 minutes. We argued about the temperature of the shower for another 10 minutes. I expected him to wash himself completely. That took some serious encouragement but…he did it. I shaved him and he brushed his teeth. Day 1 took about an hour.
Day 2 was a breeze. It became more of a game with him. I said yes, he said no and we both laughed (a lot!) before he complied. In fact, he got pretty good at brushing his top teeth. That was huge! The nights that followed went great. We created our own routines as our relationship blossomed. We spent time at the beach jousting back and forth over things like him wearing his hat and drinking bottle after bottle of water. He laughed at me as I sang to his music of choice for 2021, 70s Rock. I laughed at him as he participated in virtual Dance Parties. He helped me yell at Roxy (their chihuahua). We bonded as we pushed each other, and grew.
Last year, the weeks I spent in Massachusetts with James, John and Susan were a lot of fun. This year, the 4 weeks I spent with them were also fun but the time I spent with James this summer was unforgettable. He is an amazing individual, full of happiness and love. I understand he enjoys his routines, but I also believe he liked to change things up a bit as well. I’ll be trying to convince John and Susan to go away again next year.
There is joy in asking, and joy in saying yes. We each gained a greater understanding of and love for each other with this experience. We celebrate John and Susan’s ability to travel, James' independence and yes, Ed can add caring to his long list of skills. We all won and it started with an ask.
Family and Support are one of the Five Factors of Special Needs Planning for an individual. Along with this story, you may find it helpful to keep these tips in mind when considering caregiving for your child.
- Always keep an open mind when thinking about possible support people.
- Create opportunities for people to get to know your child.
- The formal check list of criteria required of a caregiver may be secondary to a person having a relationship with your child.
- Both a parent and potential caregiver should be willing to take some measured risks.
- Don’t shy away from talking with and asking a person to be a potential caregiver for your child; you will never get to “yes” unless you ask!