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.
Lydia, I worked for an agency that did direct care and respite for individuals with many different disabilities. They had group homes, they had individuals that lived 2 or 3 to a house that had a single staff member that came at a time and someone was there 24/7. They also had, and this might be a great option for you, what I did which was direct care of people in their own homes. People qualified for a certain number of hours a week or month and then staff were assigned to come to the individuals home to help with whatever was needed. I did things such as help with organization, assist with grocery shopping and laundry and shaving. Setting out weekly schedules, filling pill boxes, checking alarm clocks, transporting to meetings, etc. Some clients got one hour a day, others got pretty much any time they weren't sleeping and at school or work. It all depended on the individual's need. It might be worth looking into whether or not there are any agencies in your area that offer that kind of help.
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Natalie -- how do you get qualified to do that? So far I (almost) have a bachelor's degree in psychology. I would LOVE for that to be my job, either group homes or visiting at their own home.
ReplyDeleteOh, hi to you too, Lydia. lol the spanish test wasn't terrible. I didn't know the word for caterpillar.
Well there are all sorts of options available, if only you know where to look and who to ask - that's the key. and why shouldn't you have as much independence as you can manage? Any other 22 year old would be looking to spread their wings and leave home, probably returning every so often with a bag of washing and a need for a good dinner. Don't forget, it's NORMAL to do it gradually, EVERYONE makes mistakes, gets things wrong and has help to get back on track. I'm so proud of you for starting the process. Good for you Lydia!
ReplyDeleteWe have actually decided to keep our girls at home with care coming in as long as possible. We've extended our house so right now we use the space for a quiet room etc but eventually we will live next door to the girls so we can keep an eye on things but we won't be doing the day to day care.
Leigh, For many of the entry level jobs you only need a high school diploma and then they give you all the training you need. You'll get CPR-First Aid certified, certified to deliver meds, trained on individual equipment a client might need such as learning how to safely secure a wheelchair in a van or feed using a G-tube. You'll be a part of any IEP, IFSP, or IHP meetings for the clients and get trained on the paperwork involved in those. Of course you'll do the universal percautions training, safety training (how to get out in a fire for example), and then training on how to handle seizures, violent meltdowns, how to report abuse, etc. If you have a degree in a field related to this job then you can move up the ranks to do stuff like coordinating care, intake of clients, advocating for services, scheduling, managing the group home, etc. It's quite rewarding, but is a both physically and emotionally demanding job. It may not require a lot of formal schooling, but it takes a special skill set to be able to stand up to the demands of it. The most important of which is the desire to help others. Good luck. Feel free to contact me if you have any questions.
ReplyDelete"Special skill set." That's Leigh, all right!
ReplyDeleteLeigh, I think that would be a great job for you. You would be good at figuring out who needs what kind of care and services and making sure people don't get screwed over, and then seeing that its actually put into place. You're really good at seeing not just what's needed right now, but how things might change in the future and what might be needed then. So you could say hmm, nice to meet you such and such. Let's set you up to work with getting this and this, and then over x weeks we'll taper that down until you can do that on your own. Then, we'll start to work on y. You know? You'd be great at that. You're already great at that.
Natalie, I forgot to ask... in your case, how did people pay for the care? Out of pocket isn't an option for us.
ReplyDeleteLydia, Every single person had their hours covered by medicaid or something similar like Katie Beckett or another medical/mental health aid organization. I think there might have been a few parents that paid for their respite hours (babysitting when they went on dates since they couldn't just pay the teen down the street to watch their medically fragile kid or one with serious mental health issues) out of pocket, but they got regular services such as work on treatment goals and daily living skills paid for by medicaid. I hope this helps. I suggest doing a bit of research on the internet to see what sort of agencies are out there in your area and then contact one of them. They would probably be able to help you find funding too. I know I worked with one of my clients to help him find supplemental funding when medicaid tried to cut his hours, but he really still needed them. Good luck.
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PS. The company I worked for was called Martin Luther Homes They are located in several states, but not nationwide. I also worked for another agency called AWS, but they were a local agency and only located in one particular city. Out of cruiosity, what state or city do live in? I'd be willing to help you do an internet search if you wanted me to. I'm pretty good at this kind of stuff.
Lydia, Apparently the company I used to work for has changed their name. They are now called Mosaic. Here's their website just so you can get an idea of what type of thing I'm talking about. http://www.mosaicinfo.org/homepage.htm
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ReplyDeleteI found one place around here that takes part of your SSI check (half, actually) and then you can live in one of their group homes or get in-home services for help living on your own. That would be great. That's the organization that M in my autism group goes through. That's the only place I know of in my whole city, though. If you email me at autisticspeaks@gmail.com, I'd be happy to tell you where I live. I'm having trouble finding places around here that do that sort of thing. I'd like to find more than once place, find some options, so I'd really, really appreciate some help. Thanks!
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