Table 2.

Themes and additional supporting quotes.

Theme Subtheme	Supporting Quotes
Imagining, Pursuing, and Building a Good Future	“So, for us, number one is safety and of course, health, right?” (Mother B) “I knew that the school years were going to be the best years because we have fully funded education through the government. There's people. He's going to make these relationships with these [educational assistants] and these students in his class. And it's going to be wonderful. But when it's over, it's over. And I know then it's up to us.” (Mother E) “If she gets to the point where she’d have her own apartment and she has friends she can talk to…a place she can call home, where she’s proud of all her stuff—that’s what I would ideally envision for her.” (Father I) “Until my dying day, she will live right here beside me.” (Mother G)
Perils and Obstacles of an Imposed Transition
Rupture from the Familiar	“These people have invested care into [Youth I] and like kids for, well, like in her case, 18 years.” (Father I) “We just left [Children’s Hospital B]. So we went from a team of about 12 to nothing.” (Mother G) “Her pediatric cardiac specialist put a letter of reference to a new cardiologist, but the cardiologist refused her. Or the pediatric neurologist put in references to new adult neurologists, and the adult neurologist refused her.” (Mother J) “So we're going to flip over to our family doctor, which quite honestly, is not going to be specialized at all for [Youth K]'s needs. But he will be there to do the simple things, like renewing the prescriptions and that sort of thing.” (Mother K)
Exile to a Perilous New World	“Instead of going to the one place like [Children's Hospital] where everybody knows you and you're used to the system, you're used to the whole layout of the hospital, and now we're going to be just going all over the place.” (Mother A) “When a child is in the hospital, you'll have so many different specialists involved. And if that specialist works at the hospital and they know that one of their patients is in, they'll often pop in, even if it's not related to that illness. At least that was my experience.” (Mother F) “[Allied health professionals] would have their set schedule for going to see [Youth F] at school, like PT, OT, speech—and in adult world it's only when I request.” (Mother F) “It’s exhausting to have to go through all that again and to have to prove yourself, that you actually know better. And if you’re talking to them, that means you’ve already done the first several steps of troubleshooting. This is real.” (Father A)
“A Bureaucratic Nightmare”	“Getting his own place with his own workers and everything—that was a mental, psychological and bureaucratic nightmare… Watching my parents kind of try to jump through loopholes with the government.” (Sibling C) “We have a six hour interview that we have to pay a few hundred dollars for to prove that she's not miraculously cured at the age of 18.” (Father A) “I think the whole process of how the transition happens is not clear. Like I did not know. I was clueless.” (Mother D)
Weathering the Effects of Prolonged, Intense Caregiving	“My son also has a sleep disorder. So it's been like having a newborn for 27 years. So it was never like we could ever recoup or catch up.” (Mother C) “Their needs actually increase because they often deteriorate as they age. They're also physically harder to manage and the parents are also aging and many are going through health issues themselves.” (Mother F) “It was much easier finding help for our daughter when she was five years old and tiny compared to now when she is much bigger.” (Mother A) “Because we were in crisis, we literally reached out to the ministry and said, 'We're done…We're going into crisis. We cannot spread ourselves any thinner.’” (Mother C)
Living with Unpredictability, Enduring Profound Emotions	“If we're up to me, nothing should change, because obviously when there's any, like, medical complexities, developmental delays, mental health, any of these situations, then you need just as much help. It doesn't matter if the child turns 18.” (Mother B) “Yeah, well, it's a big change, right? And our best days is when there are no changes.” (Father A) “Why can't we just leave well enough alone and leave her at [Children's Hospital]?” (Mother G) “I'm grateful for every day with her.” (Father A)
Surviving the Transition
Transition Work and Advocacy	“I'm constantly following up with everybody to find out, has this referral been made? Who has this referral been made to? I haven't heard from anyone. Is there a number that I can contact? Do you have any more information? Do you know when I'm going to see this person? What should I expect? What happens if I don't hear from anyone?” (Mother H) “I've been thinking creatively about what we can do with what we have.” (Mother E) “I am involved with a local group through one of the churches in town, and we have established a group for adults, 21 and over, who have mental and physical disabilities—to kind of come together once a week in a completely social setting…Our goal was to have it a longer period of time, build the capacity up, because they do recognize that there's a big gap, that there's nothing for adults.” (Mother K) “And I called the ministry and said, 'Something's got to give, or I'm going to bring him to a hospital, and I'm going to walk away,' which…I would never be able to do. But in that moment, that's what I felt like.” (Mother C)
Family Sacrifices and Role Changes	“But it's too bad there wasn't more support so that we don't have to do it all, that WE could retire, that WE could travel, that WE could do things.” (Mother E) “I just remember the sense of profoundness in the air, like, 'Oh, my goodness, my brother is going to get his independence finally. And my parents, for the first time in their parenting and adult life, are going to get their independence back to an extent as well.” (Sibling C). “But it is so tricky because we don't know yet what the personalities of our other two kids will be. Maybe they won't be able to handle that. Maybe they will be in situations where that's just not going to work. So that's the scary part” (Mother E).
Persisting Through Hardship	“Who will take care of her when I’m gone, right? But I can’t live like that. Every day is a blessing” (Mother G). “I felt like I was blazing trails and that nobody before me had done exactly what I was doing. But it turns out that there were families before me that were doing the exact same thing and fighting for the exact same thing. And they thought that they'd made an impact on making changes, but in fact they hadn't.” (Mother F) “Any changes that have supported our goals for the future are because we have put huge work into it and tried to dress it up with a multilayer costume.” (Mother J)