Facing the Big Question: How will our son fare when we are no longer around? How to find help — and some measure of control

As parents of a young adult with significant disabilities, one question is never far from our minds: What will our son’s life be like when we are gone or simply unable to participate in his care?

A little about our son:

Mark is 22 and has cerebral palsy. He has many abilities as well as disabilities and medical conditions that require one-on-one support. My husband and I — both of us in our 60s — are the primary caregivers. Habilitation aides and nurses also provide support several hours a week.

Continue reading “Facing the Big Question: How will our son fare when we are no longer around? How to find help — and some measure of control”

The bus stopped coming (literally and figuratively), and now I’m spending way too much time behind the wheel

Call me naïve, but I never realized how much driving I’d be doing after my son Mark graduated from the school district five months ago. I have essentially taken over as bus driver. He received terrific travel training at the City Connections transition program. He’s taken dozens of rides on Port Authority buses and ACCESS. … Continue reading “The bus stopped coming (literally and figuratively), and now I’m spending way too much time behind the wheel”

Call me naïve, but I never realized how much driving I’d be doing after my son Mark graduated from the school district five months ago. I have essentially taken over as bus driver.

He received terrific travel training at the City Connections transition program. He’s taken dozens of rides on Port Authority buses and ACCESS. But since he graduated, he hasn’t taken the bus or ACCESS even once.  Continue reading “The bus stopped coming (literally and figuratively), and now I’m spending way too much time behind the wheel”