I wept when I read this article. Quinn described my experience with my daughter, who is now 20 years old. We experienced almost everything Quinn described, and I am absolutely the mother Quinn describes. I am so grateful for Quinn's efforts to share his life and help us all understand how families can best be supportive of children with this syndrome.
Quinn’s Great Expectations
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Because I was so sick, I was much closer to my parents in my early years, because I had to be. And now I'm just breaking off from my parents at 26, which is a time when a lot of other kids are just starting to come back. And when I say I'm a rich prick, it's easy to say, "Oh, he doesn't mean that," or whatever. But it's true. I was pretty spoiled. Ever since I was a little kid, I've had people doing things for me. It is taking me a while to get used to having to do them myself now. Subconsciously, I guess, I just kind of make people do things for me. It's kind of hard to complain about it, even if I want it to be different.
Can I hold down a "regular" job? The truth is that I've never had to yet. I don't know if I can. I know that's the first huge step into independence, but it's something I've never done. I've directed a movie about VCFS and I'm launching a website—a community for learning disabled kids called FriendsofQuinn.com. I imagine in my mind that I'll have a regular job someday. But I haven't done it yet.
As far as independence from my parents goes, my dad's not really the issue. He gives me s--t about money, or some dad stuff about how I should be working harder, but at this point I'm pretty used to that. I don't really take it personally.
It's my mom who is more involved in the day to day. When I think of independence, it's her I think about getting away from. Small things, and big things too. Like if I want to go to my therapist once a week but she wants me to go twice, we will butt our heads quite a bit. That has been happening lately. If my mom had it her way, I'd probably go every day. It's like, "Mom, I'm not that f---ed up."
And, obviously, she's always a little terrified for me. I'm her only child. And I've got these problems that she wants to help me with, always help me with. My whole life, she's been the one who saves me. She'll probably be terrified for me even after she's dead, She'll haunt my ass.
She's a very powerful woman. She's like a bulldog, or a lioness. You don't want to mess with her. She has controlled a lot of my life. Sometimes I'm angry about that, because I feel I'm in the passenger seat of the car and I have to ride wherever the driver wants me to go. Sometimes I feel as if I have no freedom.
But there is a flip side to everything. And there is truth in everything that we say. I couldn't have lived without my mom. She's saved my ass a million times. She has been like an archangel to me. She had the wings that I didn't. And she's basically carried me everywhere I've been.
If it weren't for both of my parents, I would have a much harder time. I don't mean my parents' money. I mean their love and attention. It's because of my parents that I don't put myself down every day.









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