>If you have a little one with autism, I hope you’ve already thought about this. I hope I’m not bringing something new to your attention, here. Because the fact is this: we can’t live with you forever. And there’s another fact: it comes up so much faster than you think.
My mom is nearing 60. She’s no spring chicken. I’ll be 22 in December. Living in this house has always been a struggle, because my stepdad is hard to live with. Ever since I’ve gotten back from college (4 years away from home in which I grately struggled to take care of myself, and didn’t always), since they are no longer “required” to house me, it’s been even harder. He expects me to be exceedingly grateful for being allowed to live here. I see it as um, I’m my mom’s kid, and I’m not able to live on my own– what else would they do with me? I’m grateful, but I’m not kissing feet here. Not to mention, I feel one thing at a time, and lately, that thing has been anxious. Sorry. Not thankful, not appreciative, just anxious.
So, what are the options?
One option is moving out into an apartment of my own. My mom would come over daily at first, then weaning down to a few times a week. I’d still need help with groceries, paying bills, making sure I have what I need, planning meals, etc. I can follow organizational schedules that others put in place for me, but I can’t make them myself. I’d have to be set up really well ahead of time. That option might work out in a couple of years, but not yet. I need more outside structure. I need to be told when to eat, or there’s a good chance I won’t do it. I need to be told when to go to bed, or that might get put off half the night. I need to be told to pick this up, put that here, get ready for this appointment at this time. I need each thing, step by step. Maybe on my own… isn’t the best idea just yet.
Another option is to continue to stay here. For the near future, that’s the only option. Until good old SSI goes through (and it will, even if it takes a lawyer to do so), I don’t have the money to live anywhere else. While I’m here, I can get to all my appointments, I have my car, I have my cat (so important!), and I have my mom to continue to help me. But things are getting tough here. We keep running into the whole, “Don’t you feel _____?!” Insert sorry, grateful, like you should help out, anything for anyone other than yourself. These parents of mine understand autism, especially my mom, but my stepdad only gets it to a point. That point stops with things like understanding that my emotions don’t work quite normally. That I have trouble feeling things for other people, that I’m slightly stuck in my own head. He can’t get that. He doesn’t get that I AM NOT A JERK. I have to keep repeating that, by the way, so that I can believe it. Okay… so, living here, also not the best option.
A third option, and one we’re starting to consider, is group homes. I don’t need a ton of help, but this would allow the directions to be given by someone other than my mom, who could certainly use a break. She could more than use one; she needs one. She’s been scheduling and organizing me for almost 22 years. At a group home, I could get as much or as little help as I needed. I could have my own space to live in and be as independent as possible, but I could also have some outside structure to my day; when to eat, when to sleep, when to do which chores. Staff could help me get to appointments and work on time. It could be really. Anyway, this is an option that we’re just starting to explore. Some people might think that being told when to eat and when to go to bed really restricts your freedom, but for someone like me who 1) has no internal sense of time and 2) has no ability to structure myself, it’s really, really comforting. We’re not sure how it goes in terms of payment, who pays and how, if Medicaid will, etc. Lots of questions to find out about still.
It feels good to know that there are options. Possibly ones that could be just what I need.