October is Down Syndrome Awareness Month and is the perfect time for Oak Wealth Advisors to launch a new blog series called “Transition.” It will follow my 22-year-old daughter, Maddy, who has Down syndrome, through her final year in her school’s Transition program.
Here’s the thing about Transition that nobody tells you clearly enough at the start: the day it ends, nothing about your child’s life is supposed to look different. That’s the whole point. If Transition has done its job, the last day looks exactly like the first day of what comes next. Same jobs. Same routines. Same sense of purpose. No cliff.
Right now, Maddy has two part-time jobs. That number matters more than it might sound like it should, because it wasn’t always two. At one point this year, she lost one of them. It wasn’t a failure of the program, nor a failure of Maddy, just real life and the kind of setback that happens to any young worker. What mattered was what came next. We didn’t wait around for it to resolve itself. We communicated with her educational team, met with the vocational instructors, and rebuilt Maddy’s confidence. Because as she has said, “having only one job sucks.”
This is the goal for the rest of this year, and it will remain the goal once Transition comes to an end. Keep her working, keep her days full of meaning, and keep her connected to something bigger than herself.
I have worked in the disability field for 30 years while also navigating the ever-changing landscape of the disability world as Maddy’s parent. Those two vantage points tell me the same thing: the school system can be a genuine partner, but it can’t be the only one.
Teachers, transition coordinators, vocational instructors, social workers, speech, occupational, and physical therapists are doing their best for your child. But there are only 7 hours in the school day and with a caseload of other students, each with their own plan and goals, they cannot be the sole engine behind your child’s future. This is where an engaged parent comes in. This is where we as parents don’t simply cheer from the sidelines. This is where we as parents must lead.
Everyone’s journey is going to look and feel different. Here is what has guided me through Maddy’s Transition journey:
Partner with the school district. Collaboration matters enormously. Show up to every meeting, ask questions, push for specifics, get the data. Remember to treat the plan the district writes as a floor, not a ceiling.
Know your loved one’s skills and strengths better than anyone in the room. You’ve watched them longer than any teacher has. Bring ideas to the table instead of just waiting to be presented with options.
Think outside the box. The obvious path isn’t always the only path, or even the best one. Job opportunities, social connections, and skill-building don’t only come from the classroom. They come from community organizations, family friends, local businesses, and plain old persistence.
Create opportunities yourself. If a door doesn’t open on its own, look for another one, or build one. The larger your network is, the more opportunities you have to pull from. Maddy, having two jobs right now isn’t an accident of the system working perfectly, it’s the result of staying in motion when something didn’t work out.
Over the coming months, I’ll be writing more about what this last year of Transition looks like for our family. The planning, the setbacks, the wins, and what we are doing to make sure Maddy’s life post-transition is as seamless as possible. Although, who am I kidding… I’ve learned by now that “seamless” and “Down syndrome parenting” rarely appear in the same sentence!
I hope this series is useful to other families walking this same road. More to come.
Director of Special Needs Services
