helping high-functioning sister gain independence
July 22, 2010 7:18 AM   Subscribe

special needs filter: how do I help my high-functioning sibling gain independence? what have your experiences with special needs siblings been like?

I love my sister and am trying to help her find some solid turf in the world of independent adulthood (she turned 25 this year, and I turned 21). She's articulate, especially about herself, and is quite socially perceptive. Right now, she's holding a job in food service and living at home after a string of group home + work and special needs residential school situations. She often ends up living with people a little below her functioning level, and getting bored and fed up with it, and then having a crisis. She has anxiety issues, like all of us ha, and creates spirals of frustration and confusion without any of the coping mechanisms to extract herself from that self-involved and self-destructive narrative. When she was younger, lots of psych meds and hospitalizations were involved in controlling these crises, but these days the repercussions are often smaller and more interpersonal -- fighting with staff member and then talking about it at length, for example.

She's starting to outgrow the 'special needs' label in a lot of ways -- she says she'd rather not identify that way anymore, and tries to pass around her coworkers and customers. What she hasn't outgrown is the hypochondria, acting to get attention, and other aspects of immaturity which we all have to get to with our own arcs of independence, but that I feel are difficult for her to achieve in group homes etc.

She's living at home with our mom at the moment, recently divorced from our dad. And though she has a job, and is volunteering in the summer, she feels eager to get on with her life and has been considering living in another group home. That brings us to the present: she knows it's not the best option in terms of chemistry in the house etc, but she's getting disheartened by the difficulty of finding a great match and isn't eager to wait for public-funded housing to become available (years and years).

So she's stuck here. But we do have another plan that helps make the wait make more sense: I offered, several months ago, to let her move in with me in a year when I finish college. I'll be establishing myself in a new city and working and applying to graduate schools, but it's also a great window of time to support her and encourage her to explore/find her independent passions/check out different kinds of jobs and volunteering. I should mention that we get along really well, and I've been able to help defuse her in conflicts in the past and have played the role of counselor/mediator over the phone throughout college. I think her and our mom have slipped into too much of a codependent relationship (they both admit this) where they reinforce bad behavior and it's hard to progress. I feel like a year in a new city with sibling-like comradeship could be something really positive I could offer to her and the rest of my family.

I have very little perspective on the feasibility of this plan. My friends with special needs siblings have distanced relationships and are into doing their own thing right now. Since I was in 8th grade, I would help my mom deal with my sister and kind of had this paternal role in things, I suppose -- my dad was depressed and alcoholic and not really there for us at that time. So the living together plan is not just coming from a place of 'romantic whim about Doing Something Good' or 'short-term problem solving,' but arises from the nature of our relationship. Still, I don't know if this will totally sour things between us or be something that I'm not emotionally capable of providing. I know I'll have to make some sacrifices for a while socially etc, but that's life, and I don't feel entitled to endless partying in my twenties or anything like that.

It'd be great to hear some feedback about what I can provide for my sister -- would this be a good idea, what else I can do -- especially from those who have siblings with special needs, mental health issues, etc. Thanks!
posted by elephantsvanish to Human Relations (4 answers total) 4 users marked this as a favorite
I don't know where you are, but can you get funding for a PA for your sister? If there was someone else who could take her out places/support her on a couple of nights a week that would both expand her horizons (especially if you could find a female PA, a bit of difference from hanging out with big bro) and mean that not all the pressure on helping her find her feet was on you. There may also be groups that offer befriending services in your area, with the same sort of idea.
posted by Coobeastie at 7:58 AM on July 22, 2010

Does she have any particular diagnosis? Does your family work with a case manager at an outside agency?

You're each dealing with a lot of stress coming from your roles, your goals and what you think you can or can't do to get there. Individual therapy would help a lot.

I've never had a person with a disability in my own (immediate) family, but we served as regular respite providers for people with varied disabilities, including one guy with autism who came over at least every Sunday for a good 15 years. I would say that coping with the needs of a high-functioning individual is almost worse than someone at a lower level; you can get lulled into this sense that things are going great and it won't be a big deal, but then you realize too late that not only does the individual have fairly complex needs (like all of us) but that your own are falling by the wayside due to the stress of being a caregiver and putting someone's needs before your own.

Where are you located? I may be able to provide some suggestions for agencies that could help you all navigate this time in your lives.

P.S. I'm sure people don't tell you this enough, but you're a wonderful, wonderful brother and son for keeping your family going like this. Take care of yourself; if you don't do that, you can't give the best care to others.
posted by Madamina at 8:21 AM on July 22, 2010

I don't have a sibling with a disability, but I have life-long experience interacting and working with people with many developmental disabilities. So maybe I can offer some advice.

First of all, I would definitely discourage your sister from attempting to live in another group home. It sounds like this is not the place for her, and she would be much happier and more well-adjusted living independently.

Second, I would suggest getting her on the waiting list for low-income housing, even if the waiting list is very long. She can move in with you for a bit, or stay with your mom, and then when her name comes up, you can help her move in to her own place.

What sort of support does she need? Is she getting it currently? Living independently is much different than living with family, so it's important to make sure that when she does make the transition to independent living, that she has access to the support that will help her be successful. If there's an Arc chapter in your area, that's a good place to start looking into what kind of support your sister can get.

It sounds like you have a good relationship with your sister, and that living with you would be great for her. Living with a sibling would provide the same comfort and familiarity, without all the weirdness and feelings of being stifled that come with living with parents. My advice to you would be to figure out what kind of support she needs, and help her get it. You could provide a great opportunity for her to transition from living with mom/in group homes to living independently. Do some research on the resources available to her in your area, and help encourage her to move toward independence.

Good luck to you and your sister!
posted by lexicakes at 9:27 PM on July 22, 2010 [1 favorite]

Find a chapter of The ARC near you. They're there to help people with special needs and their families, and would be able to give you advice on independent living, helping your sister emotionally, and that sort of thing. Seconding getting your sister on the housing list; yes, it's a long wait, but you want to be there in case something opens up faster than expected. In some areas this may open up other avenues for help as well.

You're a great brother and your sister is lucky to have someone as supportive as you in her corner.
posted by Rosie M. Banks at 8:39 AM on July 23, 2010

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