Finding the Pieces (Part 2). Meet the Staff: Whitnie Trost
“Moral of the story: expect little, get little. Expect a lot and provide the right support and prompts, and Chris will rise to the occasion and do a great job. ”
(Continued from Dec 1 post…)
What is clear in most of my interactions with my youngest son Chris is that when he has a strong opinion, he wants it recognized. He wants self-determination and respect. Every day, his actions remind me and everyone around him that he is first a 20-year-old young man. Chris knows he is not a child. He may learn and understand at a level that mimics someone younger, but Chris does not want to be treated like a child, talked to as a child, given materials that are for a child. He knows he deserves better. We use his AAC device as much as we can to facilitate him sharing his wants and needs and support requests. But sometimes, he gets frustrated because he feels that he’s already used his body language and actions to share his opinion, so why would I make him say so again on his device? Valid point.
As we move forward through the transition to adulthood, I will be transparent. Christopher will always need some form of support. AND he does well when he has someone who will model a task and then have him do it alongside them or take turns. One equally brilliant and annoying thing about Chris is that his actual work production is directly in line with our expectations of him. He’s figured out that if he delays answering a request or following a direction, that someone will often just do the task for him. Moral of the story: expect little, get little. Expect a lot and provide the right support and prompts, and Chris will rise to the occasion and do a great job.
Over the past year, I’ve taken this information and the experiences we’ve shared together into our new journey of moving into a new community. We’ve essentially started over with resources, providers, systems, and our support circle. I have had to reidentify the direction we take to support Chris to become a self-determined adult. What does that look like for Chris? As we met new neighbors, I shared a neighborhood-focused person-centered profile introducing Christopher and myself and sharing some dos and don’ts, made with the offering of a sprinkle of candy to bribe compliance (wink). I reached out to my new Church community, utilized the supportive structure already established there, and discussed with the bishop possible areas for volunteer opportunities for Chris and work experiences in the area that might one day blend into a job he enjoys. Chris has shown us how much he likes to use a paper shredder, so we are working with our HOA to plan drop off days for neighbors to bring documents Chris can shred that week. We will work to maintain a schedule, build endurance and patience, and understand when a job is completed and what that looks like.
Working for FACT Oregon has stretched my creativity and ability to align my thinking to the unique way my son’s brain works. As I work with families and we share stories back and forth, I am often struck by how parallel our lives are. I have learned that collaboration does not always mean agreeing on everything but finding the areas we can agree on and brainstorming, problem solving, and learning to compromise so that some form of progress is made. Time marches on whether we have one, two, or a dozen meetings in a year. Asking “What will be helpful now?” and “What will be helpful in the next few months?” is a good way to get the ball moving forward again. Then meet, regroup, and readdress as needed.
If I were to sum up what’ve I have learned as a parent advocate and in my role at FACT Oregon, I want to highlight three things.
1. What we do at home, and how we identify what works and what does not work there, always provides valuable information and insight that can be adapted to school, work, and life in community.
2. Doing my homework as a parent and getting to know my child’s IEP and what/where things are on it is essential to knowing where and how to start in addressing concerns.
3. We are human. We are parents, children, grandparents, and we live in a world that is unpredictable. Letting it be ok for now, letting ourselves step back, focus on self-care, and regroup later is totally ok. I realized that taking a pause is not accepting failure. My world fell apart last year, and my family needed me in ways that made the IEP process irrelevant for a time. When I was ready, I came back, took a breath, got a pound of See’s Candy of my choosing, and reengaged. It’s never too late to be an advocate!
