We Know Disabled (original) (raw)
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March 11th, 2009
How to approach parents... @ 01:48 pm
Hey all, from my previous post, I know you are all aware that I am moving in the next few months. To briefly recap, I moved out to go to graduate school and it didn't work out because of problems with my roommates (not because of my disability). Now my parents are hesitant about me moving again, and they were not at all convinced that I left due to roommates. Instead they thought it was because I couldn't handle scheduling my aides and my own life. Last time I moved, I wrote out my plan 6 months ahead of time and was very open with them about the whole process. But this openness resulted in them trying to take control, even though I was very clear. This 'taking of control' ultimately led to my downfall in my first move. Now I am wondering how I should approach the new move? Should I be up front with them like the first time and discuss all of my plans with them, or should I just feed them little bits of information (just nought to keep the,my off my back), or should I say nothing at all until I'm completely ready to move out?What concerns me most is that my dad is way more sceptical this time around. My mom is cool, we have our disagreements, but she gets that I'm moving no matter what. I have hardly talked to my dad about it at all and he keeps saying stuff like "your not moving any time soon" and "last time was a disaster". I don't feel this way about the experience, but he does. To me it was a learning experience. So I'm kind of stumped on how to approach him. If I disclose my plan in its entirety, I run the risk of him just dismissing it and living in hell for 3 more months. But if I don't tell him anything, and just give him like a weeks notice, I don't know what will happen. So what would you do?
March 10th, 2009
(no subject) @ 05:34 pm
I'm deleting this lj account, so wholuvsya will be the sole maintainer.
i'm glad this community has been helpful to you all.
March 6th, 2009
Live-in @ 02:27 pm
Hey everyone, I was just wndering is anyone has had/ knows someone who has had a 24 hour live-in? I'm noit just talking about a employee/roomate who works overnight. I'm talking about a person who is "on" for 24 hours a day. If so, how did it work out? Thanks.
Eva
February 26th, 2009
We Count Too @ 06:50 pm
Hey everyone,
I just wanted to let you all know that I started a community for people that have sibling with special needs. It's a place where they can vent and get positive feed back on what's going on in their life.
If you know of anyone that needs someone to talk to, please tell them about the community. We haven't had much traffic in the community, due to me not keeping up with it like I should. But I'm going to start making sure this time that it stays up and running. :)
Thanks a bunch!
Over-reactive parents @ 03:47 pm
Hey all, hope your winter/spring has been good. So I have a couple questions about over-reactive parents. Looooooong story short, I moved out from home to go to grad school and it turned out that the girls I had arranged to live with (I had known them as friends, and one had been my aide for 2 years) turned out to be terrible, controlling, and dramatic roommates. To give an example, one roommate routinely took me outside and lectured me about everything I did wrong. This kind of stuff was going on all the time and stressed me out so much I had to leave. So even though I signed the lease and am contractually obligated to pay it (the rent they give me was majorly discounted because they were over night aides), they are moving out early, leaving me to pay the entire rent even though I don't live there anymore. This is not the main issue- I can talk to the property manager and work something out so that I can hand the lease over to somebody else. The main problem is that one of my roommates (the former aide and 'lecturer') wrote me a very nasty email saying that she wanted to cut off all contact with me because our relationship was 'unhealthy' and I handled the communication poorly (by this she is referring to a time when I tried to reconnect with her after our fall out. When she demanded an apology but refused to admit any blame herself, I stopped corresponding with her about anything except the rent.). The email bugs me but what bothers me more is that she cc'd it TO MY MOTHER. That began a long conversation/lecture between my parents and I, and now my Dad has come to the conclusion that I have 'poor social skills' and no friends. This is obviously not true, but his idea is now getting in the way of me moving out of the house. He thinks I need to learn social skills before I can live on my own. My mom just thinks that these kinds of arguments are just things that are bound to happen in your 20's when you first try to live with other people. I agree with her, and I also agree that I could have handled myself better, but I just need to convince my dad that is not dire, and certainly shouldnt keep me from moving out. I have friends and good social skills but we all mess up, its just part of learning. My dad is usually the person who gives me the most freedom and the most benefit of the doubt., but since I moved back, my parents have flipped roles majorly. One question is how do I get him over his 'she has no social skills' kick. Yes, I'm 26 and can make my own decisions, but it would be sooooo much easier if I had him on my side.
My other problem is that regardless of what he thinks of my social skills, my dad has had this weird fantasy since I was like 9 that I could have this magical 24 hour 55 year old "live-in" that we wouldn't have to pay hardly anything (because she is an illegal immigrant) and who would serve as my night aide/housekeeper/cook/life-time companion (if you have seen the movie 'Gaby', this is what he based his fantasy off of). Besides it being impossible to find this magical person, I hate this idea and it goes against everything I want. It should be noted here that I actually will be hiring a housekeeper for three days a week to clean, do laundry, etc. But every time I mention hiring aides when I move, this idea comes up again and its getting sooooooo old. So, first of all, have you ever heard of a person having an employee like this working for them and succeeding? Second, how can I convince him that I'd be miserable if I spend 24 hours with the same person up my ass everyday? Finally, how can I convince him that I don't actually NEED a person like this and that I'm perfectly capable of hiring and scheduling my own aides (the fact that I have been doing this for 20 years does not seem to matter to him).
Any suggestions/ advise/ stories?
Thanks
February 25th, 2009
February 15th, 2009
Ultimatum for parents – good or bad idea? @ 02:55 pm
Hey all
So I have a dilemma. Long story short, last June I moved to Oakland and lived on my own for the first time. I have quadriplegic cp and need 24 hour care. Because of roommate issues (one roommate was verbally abusive and living with three girls is not my cup of tea) I came home in October. Even though I have told my parents a billion times it was my roommates that made me come home, they believe it was because managing my aides was too much work. My aides were GREAT – I couldn’t have been happier! Because I signed a year lease I have to wait until June to move out again (which is fine and understandable). However, now that my parents believe I “failed” in Oakland, they feel the need to plan my next move for me. Their lovely plan is I me to have only 8 hour of aides a day and have a 55-year old Hispanic housekeeper look after me the rest of the time. This is not my plan. My plan is to buy a duplex, have 16 hours of aides a day, have my overnight aide live in the other side of the duplex, and live like any other 26 year old. So when I tell my parents my plan should I say, “I’m not moving unless everything goes my way?” Would that kind of ultimatum help or hurt the scenario. I know I will be miserable if my parents have it their way. Help!
Thanks!
Edited: Let me clarify. I absolutely agree with all of you, but I should let you know a litllle bit more detail. When I first moved out, I was told things like "I want you to live here forever," "we'll build you a guesthouse," and "I don't want your aides to be drug addicted theives". So that's what I'm up against. Granted, I eventually did move, and it was 90% my way (but I think that will just fuel the fire because it was "my way" and it "failed"). So, under normal circumstances I would be reasonable person presenting my ideas to receptive parents, but in this case, I am met with great opposition.
February 11th, 2009
Book on CP and aging @ 10:14 am
Hey folks, so because few people seem to understand how hard aging with CP can be, I have decided to write a book about it. This book will primarily be for doctors, physical therapists, and parents to understand what it's like to age with cerebral palsy. I want each chapter to have a different person talking about their body and how it changed. Obviously I don't expect people to have medical knowledge, but I do expect you to be able to articulate your experience. This is just in the begining stages, but if the book gets published, you will certainly be compensated if I;include your article. Let me know if you're interested or have any questions.Thank you.
Eva
February 6th, 2009
How do you know when you can't manage the house on your own anymore and what do you do then? @ 01:00 pm
For reasons due to jobs we had once, we live about 600 miles from my family and 300 miles from his. We bought a house with a 3 acre yard in the middle of nowhere 10 years ago when we were strong and healthy. DH is sicker than I am and I end up doing most of the chores. I do not look forward to mowing that blasted 2 acres of grass this year. Last year we had a guy come and mow one acre when the mower was broken and we were waiting for the repairman to get around to us and that was $75, something I don't care to pay often. I need to touch up paint on the fence and the shed, shampoo the carpets, and give the kitchen a good clean, all things I really don't think I can pay others to do. Its tiring, but I can still do it.
Yesterday, I realized I was jealous of my mom having my brothers and my aunt and uncle to take her to the doctor and do things for her. My family is more likely to help out than his. Plus, there's more of them in one spot.
When do you pack it in and move back to where the family lives to have support? When do you know you can't do it all anymore and what comes next?
I belong to a sewing circle and he doesn't know anyone at all. He never goes anywhere for fun. I don't socialize with the sewing circle people much, even when I'm there and never outside of the weekly meet. They've actually told me to sew less and talk more. I'm just naturally quiet.
January 30th, 2009
Question about wheelchair safety in the car @ 04:07 pm
Hey folks, so I was wondering what you use in the car. I just got tie downs so I dont have to transfer but I'm kind of worried about what I ordered for for additional support. I have a regular seatbelt that keeps me in my chair (metal buckle) at all times. I ordered a chest harness (only for the car, I don't need it to sit) which is technically made for postural support. but I figured that it would help hold me in my chair if I had a car accident. But what concerns me is two things: Fisrt I looked online and it appears that the straps that attach the harness to the chair are pretty thin and the buckle is plastic. And THEN I found this video....the second one down (postural support only):
http://www.rercwts.org/RERC_WTS2_KT/RERC_WTS2_KT_Edu/crashtest_videos/crashtest3.html
So I was wondering what you all use to be safe in the car?
Thanks.