Starting to worry about when my parents are gone

[Aspigander]

Okay, something I've been thinking about here, and I'm kind of frustrated. And concerned. Now, my parents are both pretty healthy, but they are both in their 50's, so starting to get a little up there. And, as my mom often tells me "we could get in a crash tomorrow and be gone."

Anyway, if I *just* had the visual impairment, I'd probably be much more functional than I am. After all, lots of people with limited vision or even no vision lead pretty independent lives.

Or, maybe if I *just* had the Asperger's. After all, that's considered pretty high functioning. However for some reason I seem to leave some to be desired in the functioning department.

Don't get me wrong, I'm not trying to go off on some self-pity complex. That would be unproductive and even counterproductive.

But with my current situation, I'm really wondering what's going to happen once my parents are gone.

I'm currently on SSI. I really don't want to live off the government my whole life. But with the crappy economy, I'm not optimistic about finding employment anytime soon. Not to mention that I'm so reclusive and have such a hard time *getting* where I need to go unless my mom's with me, well, people who work need to be able to step outside their homes. I am *physically* capable, but VERY reclusive. When at my apartment, I have trouble taking trash to the dumpster or even fetching the mail about 20 feet from my door because I might run into someone. Not only do I not handle stress well. All these things combined make me less than optimistic about becoming a productive member of society.

I am very disorganized. As much as I want things to be organized, I have trouble just getting started on what needs done. There's no structure. I don't know how to create structure. And there's often a disconnect between "Hmm, there's a sink full of dishes" and "I should actually *do* the dishes." Often I'll look at the pile of dishes, think, perhaps subconsciously, "hmm, dishes in the sink", and somehow not move on in thinking to "I think I'll do them." I always thought this was because, well, washing dishes isn't exactly the most enjoyable activity, so I procrastinate, which may be part of it but I've thought for a while that there's just some disconnect between "they're dirty" and "they should be cleaned". Same with other things like hygiene.

While there are options for public transportation, I'm so anxious about going anywhere alone and being "out in the world" without my mom (or dad, though usually my mom) that I pretty much don't go anywhere unless someone can transport me.

I don't really have offline friends. My mom keeps saying that friends are good to have around in case you need help. But I have problems with that department.

While I consider myself pretty intelligent (and others consider me that way as well), a lot of stuff people take for granted as "common sense" seems to elude me. I do have *some* common sense -- after all, I never had to learn the hard way that you don't put your tongue on a freezing flagpole, but I'll often make mistakes or have to ask my mom questions about things that at my age are just "common sense". I can't tell you how many times I've heard my mom say: "Come on, that's common sense", or, "It's called thinking." People need to have common sense.

I could probably list more things, and perhaps I will if more comes to mind, but I'm really starting to worry about what's going to happen when my folks are gone. Not to mention, I really don't *want* to have to rely on them.

Anybody have any ideas?

[Tootsie]

Aspigander, you might ask your parents if they have made any kind of provisions for you in their own retirement planning, or legal will, that will give some guidance as to what you can expect when they can no longer be of help to you.

There are programs sponsored by local governments for supportive services for those with disabilities. In your case, that would be your vision. However, there are also group facilities that give people with varying degrees of disability, the opportunity to live in housing that meets the needs of those living there.

You might have someone who is limited intellectually, but has physical capabilities, living with someone confined to a wheelchair and needs help with bathing and cooking. There may be others in the household, that are able to work at jobs in the community but cannot manage things like utility bills, telephone or TV cable personnel, calling the garbage company when for some reason their garbage is not collected, etc.

It all depends on what is available in your own community and how you would fit into those structured plans that are available. Your first step would be to speak with your parents and tell them that you would like to learn how to live more independently. Cheerio.

[LIZARD]

(((((((((Aspigander)))))))))).

I echo Tootsie's words, and I'd also have your parents look for services to help you with life skills. A therapy that does this is one we're getting ready to start with our 14 yo son. A therapist teaches you how to do household chores and can teach other things, such as balancing a checkbook. It's called PASS. I don't know where you are, and I know it only goes to 21 yo here (RI), but it's worth checking into.

http://www.rewardingwork.org/RhodeIsland/HelpfulResources/RhodeIslandPASS.asp

Good luck!

LIZARD :)

[frogmama]

Aspi - I'm usually a lurker and haven't said "hi" to you yet, although I am enjoying reading your point of view. ;) It's actully good that you are thinking about what you life will be like in the furure - if you don't think it will happen, you don't put the things in place now that you will need.

My husband works for a company that only employs people with visual impairments, there are many agencies like this and you should see what is in your area. His company has caseworkers that assess the person's situation and assist them in all areas - employment, transportation, obtaining correct medical/vision service, equipment, etc. These are not menial jobs either! His department does document imaging (putting all of a compaines paper files into a computer searchable PDF form, very big now since the pres passed a bill saying DR's offices must be paperless by 2011) and the skills his employees learn have enabled several of them to be employed in the private sector.

Also, see if your community has something that's called "Shared support living" here - basically you get paired with a someone who's skills and abilities back up your deficits. Or even with an NT person that just looking to make college money.

[GinaMarie]

Here I've been told about the Department of Rehab helping. Maybe looking into that.

You can also have your parents look into therapies to help you with your reclusivness and organization.

I have faith you CAN make it. :o) And its great that you are thinking about it and start working on it now while you can before your parents are gone.

HUGS,
Gina Marie

[Aspigander]

Thanks everybody. :)

I'll do some googling. This is something, though, that I'm not sure I should be putting on my parents. My dad will likely leave everything to my mom, and my mom will resent me asking her to do things that most people can do for themselves.

I *somewhat* like the idea of the shared support living. A couple of things -- I like my privacy, and I'm sure such a setting (I'm assuming what it referred to here is kind of like a group home?) would probably frown upon me having my cats. I also kind of have a dog but she has to live at my parents' because I can't have dogs at my apartment (basically, she's a puppy that was in a litter my parents, who breed dogs, had and she was very sick and I intervened to keep her from being euthanized -- she's now doing quite well). So basically, if I went into some facility like that, well I'm not sure I could because there are animals involved, and they're my babies, and I am *not* the type to just "get rid of" a pet I've chosen to take responsibility for once it becomes inconvenient. So that sort of muddies the waters.

I did spend some time in a rehab facility for those with visual impairments. I will say it is a good program, and had I just had the VI (or perhaps if we'd known about the AS at the time) it might have been much more helpful. Unfortunately, because of some things they were trying to teach me, that they're used to teaching folks with VI, caused me so much anxiety (essentially paralyzing at times), along with a couple other things, that I don't think I was able to glean from it as much as I otherwise would have. The general attitude (except from one or two, maybe three staff) towards my fear issues that were causing so much of a problem was basically "get over it". Gee, I'd LOVE to just get over it.

[GinaMarie]

Im not sure about all but I know like the assisted living place my grandma lived in they did allow pets. So you just have to look into it.

It might be a good thing for YOU to look into these things. It would also show your parents that you can show some independance and that it will also show YOU. AND you will also see for yourself what options there are for you. If you are on SSI you can also talk to your worker. They can provide assistance in areas like that.

GM

[Kristen (ColeysMom)]

Maybe you could make a check list or a to do list. Perhaps your mom could help you out.

Maybe a daily list, a weekly list and a monthly list or something. Then you could just sorta do the things and 'check them off', versus needing to 'think' about it.

Although I do think that some of this stuff is a matter of practice. I'm no expert or course, but I have seen a lot of progress myself with the RDI approaches so I do think that looking in to some of the things Mili noted in the other thread could help you here as well.

I'm sure you will be just fine! It is just likely going to take a bit more effort on your part. And trust me...I don't think anyone REALLY likes doing dishes or any of that stuff. It's REALLY easy to find other more important things to do instead. But one thing that helps me get through some of the mundane (sp) stuff like that...it's a time to sorta 'drift' in thought and relax kinda...go into auto pilot and let your mind wander a little. In that way it can become a welcomed part of the day.

[GinaMarie]

It takes 28 days to create a habit.. So to become a habit you have to do something at least 28 days in a row (give or take).. by then you SHOULD have it down as a routine. So if you make it routine to say "do the dishes" and maybe put a reminder everywhere you need to and then do it each time OR any "habit" you want to create, then by then end of the month it should be almost automatic for you to be doing it..

At least this is what I've heard. lol I do try it myself but also with my disabilties and with trying to raise 4 boys and two with special needs their selves it isnt always easy.

But try it.. THink of at least ONE thing you want to make a "habit" or "routine" and try doing it DAILY for a month and see if it becomes automatic for you to do it.

I hope this helps you some

I also like the list.. That will help you with creating the habits.

HUGS

[Keggy]

What you described sounded pretty much like a number of young adults in the same situation. Many people grow up feeling unprepared to take care of things. The things you describe will come to you.. trust me when you start to not have dishes to eat off of, or you finnally meet someone you want to invite over but the house is trashed, you will learn. I think you probably have a tremendous advantage though because you will have resources available to you and your parents are willing to help you learn now (are they not willing to let you clean up and be organized now?)
I think you got some good advice on how to do it, but you need to accept and see clearly that this is something you can do and not the challenge you are making it out to be.
Worse case sensario they do have shared living for people in your situation, but I think you should strive towards independence.