What arrangements do you have with adult children living at home?
September 21, 2017 9:24 PM Subscribe
Our 23-year-old lives with us. My partner and I are trying to figure out expectations, division of expenses, and how to encourage our child toward adulthood, and I'd love to hear about what other parents do. There are complicated factors having to do with disability, so do read, please.
Our 23-year-old lives with us and will be for at least another 18 months or so. My partner and I are finding ourselves frustrated with certain things about living together, and aren't quite sure what expectations to have/insist on. We'd love to hear about other parents' arrangements with their adult children who live at home.
We have some complicating factors. Our 23yo receives disability income for mental health reasons but also is in early stages of diagnosis and treatment for POTS (an unnatural increase in heartrate from standing up, more or less). They're also on the autism spectrum, and they have complex PTSD from an abusive and neglectful childhood. We adopted them in their late teens after their birth family abandoned them.
I say all of that just so people know that some strategies that would work with other young adults might not be available to us. At the same time, we really want to encourage 23yo toward independence and adult behavior, something they struggle with yet also aspire to. So here are the kind of questions I have:
How have you and your adult children dealt with finances? How did you divide food expenses? Were you responsible for your adult child's meals? This one is being vexed for us. I lived with my parents for a few months when I was about 24 and between full-time jobs. I worked part time, managed all my own bills, gas in my car, etc. They didn't charge me rent. If I was around at dinner time, I was welcome to join in, but if they got takeout or went out to dinner, they certainly didn't think they were obligated to include me. With 23yo, their disability and other challenges mean that they don't have as much of an out-of-the-house life as I did, and they tend to expect to be part of whatever we're doing. We find we want them to be more independent, both to relieve pressure on us and to help them with taking more responsibility for themself, something they struggled with.
If you have experience with an adult child living at home, tell me how you negotiated various boundaries around finances, space, and so on. If you have experience helping a young person on the spectrum improve their independent skills around self-care, home care, and so on, I'd be happy to hear about that as well. These two things seem intimately connected to us, and it would help us to have a sense of what other parents and adult kids have worked out even if those agreements won't map directly onto our complicated situation. We're stuck and frustrated, and would like to hear ideas.
Our 23-year-old lives with us and will be for at least another 18 months or so. My partner and I are finding ourselves frustrated with certain things about living together, and aren't quite sure what expectations to have/insist on. We'd love to hear about other parents' arrangements with their adult children who live at home.
We have some complicating factors. Our 23yo receives disability income for mental health reasons but also is in early stages of diagnosis and treatment for POTS (an unnatural increase in heartrate from standing up, more or less). They're also on the autism spectrum, and they have complex PTSD from an abusive and neglectful childhood. We adopted them in their late teens after their birth family abandoned them.
I say all of that just so people know that some strategies that would work with other young adults might not be available to us. At the same time, we really want to encourage 23yo toward independence and adult behavior, something they struggle with yet also aspire to. So here are the kind of questions I have:
How have you and your adult children dealt with finances? How did you divide food expenses? Were you responsible for your adult child's meals? This one is being vexed for us. I lived with my parents for a few months when I was about 24 and between full-time jobs. I worked part time, managed all my own bills, gas in my car, etc. They didn't charge me rent. If I was around at dinner time, I was welcome to join in, but if they got takeout or went out to dinner, they certainly didn't think they were obligated to include me. With 23yo, their disability and other challenges mean that they don't have as much of an out-of-the-house life as I did, and they tend to expect to be part of whatever we're doing. We find we want them to be more independent, both to relieve pressure on us and to help them with taking more responsibility for themself, something they struggled with.
If you have experience with an adult child living at home, tell me how you negotiated various boundaries around finances, space, and so on. If you have experience helping a young person on the spectrum improve their independent skills around self-care, home care, and so on, I'd be happy to hear about that as well. These two things seem intimately connected to us, and it would help us to have a sense of what other parents and adult kids have worked out even if those agreements won't map directly onto our complicated situation. We're stuck and frustrated, and would like to hear ideas.
Best answer: My children do not have diagnosed disabilities although I suspect one of them does have some degree of autistic like behavior. One of mine, 23, lives in NYC and not at home. The other two come home from college for breaks. I lived at home for 8 months when I first graduated from college many years ago. I can only give you what happened/happens in my family.
Like you, my parents expected me to act adult like. I had a job that paid, but not enough to cover commuting costs and apartment rents in NYC. So, I lived at home. I still remember the discussion I had with my mom about a week after I came home from college graduation. "Augie, what are your plans?" "Plans? Plans about what?" "Plans with the next three years of your life. You are welcome to live here, in fact, I will cherish the hopefully short time you do. If you are going to live here, there are certain expectations beyond what we expected when you came home for college breaks."
We then went over what I was making, what my legit expenses were and came up with what my mother referred to as "a contribution to the family number". It was not rent. It was my ability to contribute to the household in relation to my income and time. Time I was planning on being there (after work, on weekends, etc) and time I had to contribute after commuting. We agreed on a dollar amount per month I would pay (It was small, $100 or $200) and what were my non cash contributions to the house such as making dinner for the family 1 night a week, taking out the trash, cutting the grass, etc. We also discussed what I should expect in return. A roof over my head, a bed, and meals I could make on their schedule. (I think anything in the frig was fair game too.)
The point was to treat me as an adult with negotiated expectations, negotiated cash, and to loosely define how long the relationship was expected to last (sort of like a lease). She did that by asking about the next 3 years.
With my children, I do the same. Since they were about 16, when they are at my house (I am divorced and shared custody) there were clearly defined expectations in terms of contributing to the household even if that was just picking up after themselves and doing their own laundry, what meals to expect from me and what I would pay for and they should pay for out of the jobs they were expected to have.
I think the overall concept is to treat them like adults knowing there are individual limitations to maturity and ability. Work with you child together, to come up with expectations. Find out what they expect from you. Tell them this is the beginning of their adulthood and should be viewed as steps towards independence. The key is communication and expectations. Sit down with yoru child and ask them what their plans are, what their goals are and how they are thinking of working towards that goal.
I think too that there are certain basic things anyone, child, parent, cousin, friend that lives in a household should be expected to do such as put their dishes in the dishwasher, make their own bed, do their own laundry, etc. If you look at simple things like laundry, I expected mine to do theirs, but if I was doing a load of whites and it was not full, I always offer to toss some of theirs in. That way they learn to work together, be your wingman and they yours when you live with someone or have a relationship with someone.
As for your child, if they struggle with a lot of this, do not set them up to fail with too high expectations. Start with ones they can meet for a month or two and then start increasing. Tell them that is what you are doing. "Let's start with me including you for dinner on weeknights, but on the weekends, you are on your own. Let me know of any groceries you want me to have for you to make your own dinner or go to the deli and get your own." Then in a few months, ask them to make dinner for the family on say Tuesdays. I think discussing such things as weekly progress they are making on themselves or progress towards a degree or progress towards a job, etc is fair and reasonable.
It is my experience that for the most part, people, especially your own children, live up or down to your expectations. So, I would make your expectations reasonable but a challenge. Make them not be busy work, but work on skills they will need on their own one day. I have found that you cannot expect your child to act like an adult if you don't treat them and respect them as adults. At the same time, know your own child's limitations. The other concept I was taught and try to teach my children is that they are free to make decisions on their own and can make whatever decision they want, but they have to live with the consequences of their decisions. They are old enough to understand their options and the various consequences and old enough to have to live with the good and bad. Poppa is not here to bail them out of every situation. (Some of course, but not ones made from non essential or optional decisions. Left your phone in the grass while playing football with friends? Either find it or pay for your own replacement type of consequences.)
In short, we defined expectations for both me and my children in terms of household contributions, we discussed bigger longer goals and the short term context of those goals, we negotiated on if not equal terms, adult like terms, and we tried to tailor it to their own resources.
Going back to me, my mother priced her family contribution number so that I could afford some things, but not to go out drinking every night and then not have anything left over for "rent". And, without telling me in advance, every single payment I made to her, she put in a bank account with my name on it and gave it to me the day I moved into an apartment in the city. It was a generous and nice surprise that allowed me to buy a bed instead of the sleeping bag I was planning on using for the first few months.
posted by AugustWest at 11:32 PM on September 21, 2017 [48 favorites]
Like you, my parents expected me to act adult like. I had a job that paid, but not enough to cover commuting costs and apartment rents in NYC. So, I lived at home. I still remember the discussion I had with my mom about a week after I came home from college graduation. "Augie, what are your plans?" "Plans? Plans about what?" "Plans with the next three years of your life. You are welcome to live here, in fact, I will cherish the hopefully short time you do. If you are going to live here, there are certain expectations beyond what we expected when you came home for college breaks."
We then went over what I was making, what my legit expenses were and came up with what my mother referred to as "a contribution to the family number". It was not rent. It was my ability to contribute to the household in relation to my income and time. Time I was planning on being there (after work, on weekends, etc) and time I had to contribute after commuting. We agreed on a dollar amount per month I would pay (It was small, $100 or $200) and what were my non cash contributions to the house such as making dinner for the family 1 night a week, taking out the trash, cutting the grass, etc. We also discussed what I should expect in return. A roof over my head, a bed, and meals I could make on their schedule. (I think anything in the frig was fair game too.)
The point was to treat me as an adult with negotiated expectations, negotiated cash, and to loosely define how long the relationship was expected to last (sort of like a lease). She did that by asking about the next 3 years.
With my children, I do the same. Since they were about 16, when they are at my house (I am divorced and shared custody) there were clearly defined expectations in terms of contributing to the household even if that was just picking up after themselves and doing their own laundry, what meals to expect from me and what I would pay for and they should pay for out of the jobs they were expected to have.
I think the overall concept is to treat them like adults knowing there are individual limitations to maturity and ability. Work with you child together, to come up with expectations. Find out what they expect from you. Tell them this is the beginning of their adulthood and should be viewed as steps towards independence. The key is communication and expectations. Sit down with yoru child and ask them what their plans are, what their goals are and how they are thinking of working towards that goal.
I think too that there are certain basic things anyone, child, parent, cousin, friend that lives in a household should be expected to do such as put their dishes in the dishwasher, make their own bed, do their own laundry, etc. If you look at simple things like laundry, I expected mine to do theirs, but if I was doing a load of whites and it was not full, I always offer to toss some of theirs in. That way they learn to work together, be your wingman and they yours when you live with someone or have a relationship with someone.
As for your child, if they struggle with a lot of this, do not set them up to fail with too high expectations. Start with ones they can meet for a month or two and then start increasing. Tell them that is what you are doing. "Let's start with me including you for dinner on weeknights, but on the weekends, you are on your own. Let me know of any groceries you want me to have for you to make your own dinner or go to the deli and get your own." Then in a few months, ask them to make dinner for the family on say Tuesdays. I think discussing such things as weekly progress they are making on themselves or progress towards a degree or progress towards a job, etc is fair and reasonable.
It is my experience that for the most part, people, especially your own children, live up or down to your expectations. So, I would make your expectations reasonable but a challenge. Make them not be busy work, but work on skills they will need on their own one day. I have found that you cannot expect your child to act like an adult if you don't treat them and respect them as adults. At the same time, know your own child's limitations. The other concept I was taught and try to teach my children is that they are free to make decisions on their own and can make whatever decision they want, but they have to live with the consequences of their decisions. They are old enough to understand their options and the various consequences and old enough to have to live with the good and bad. Poppa is not here to bail them out of every situation. (Some of course, but not ones made from non essential or optional decisions. Left your phone in the grass while playing football with friends? Either find it or pay for your own replacement type of consequences.)
In short, we defined expectations for both me and my children in terms of household contributions, we discussed bigger longer goals and the short term context of those goals, we negotiated on if not equal terms, adult like terms, and we tried to tailor it to their own resources.
Going back to me, my mother priced her family contribution number so that I could afford some things, but not to go out drinking every night and then not have anything left over for "rent". And, without telling me in advance, every single payment I made to her, she put in a bank account with my name on it and gave it to me the day I moved into an apartment in the city. It was a generous and nice surprise that allowed me to buy a bed instead of the sleeping bag I was planning on using for the first few months.
posted by AugustWest at 11:32 PM on September 21, 2017 [48 favorites]
Not really what you're asking for but my child's developmental paediatrician (two of mine have ASD, one asperger's type, one classic/severe, here I'm referring to the aspie since that seems closest to what you're asking about) told us to deduct a 3rd off their age to provide a basis for their behaviours and our expectations. Does 15-16 fit better with their behaviour than 23?
posted by intergalacticvelvet at 12:57 AM on September 22, 2017 [9 favorites]
posted by intergalacticvelvet at 12:57 AM on September 22, 2017 [9 favorites]
Best answer: intergalacticvelvet, autistic adults are adults. If someone applied that formula to me, I would be extremely offended. I'm almost 30, not 20. Would you want it applied to you? If it's not ok to do to a neurotypical abled person, it's not ok to do to disabled people.
OP, I don't know what to tell you about setting expectations etc, but from the opposite side of the equation I would hazard a guess she may feel bad about being so dependent.
I'm autistic and severely chronically ill. The times I've had to live with my parents as an adult, I was keenly aware of feeling like a burden on them and like a failure as an adult. I did everything in my power to combat that. Chances are good they are doing the same.
Dealing with a new POTS diagnosis, as well as autism and PTSD and everything else, must be extremely hard. What they need right now is your love and support and to know they are not a burden or a problem to you.
posted by bizarrenacle at 3:30 AM on September 22, 2017 [8 favorites]
OP, I don't know what to tell you about setting expectations etc, but from the opposite side of the equation I would hazard a guess she may feel bad about being so dependent.
I'm autistic and severely chronically ill. The times I've had to live with my parents as an adult, I was keenly aware of feeling like a burden on them and like a failure as an adult. I did everything in my power to combat that. Chances are good they are doing the same.
Dealing with a new POTS diagnosis, as well as autism and PTSD and everything else, must be extremely hard. What they need right now is your love and support and to know they are not a burden or a problem to you.
posted by bizarrenacle at 3:30 AM on September 22, 2017 [8 favorites]
Best answer: My ASD son is 22 and he lives at home. He works full-time but can't afford rent because of his student loans. We do not charge him any rent or money for expenses but he does have chores. We also expect him to interact with the family and not just go up to his room after work. He is responsible for all his own expenses like take out, car, medicine and hobby related things. We pay for groceries but I will sometimes have him run out and get me something. Our goal right now is to help him get out from under his loans so he can move out. We've helped him make a budget and figure out how to best use his savings to pay down the principal and pay the biggest one off sooner.
Good luck!
posted by Biblio at 4:50 AM on September 22, 2017 [2 favorites]
Good luck!
posted by Biblio at 4:50 AM on September 22, 2017 [2 favorites]
Best answer: My 23yo w/mh issues lives with us and we have just begun charging rent. It is a flat fee but he knows it includes room and board, WiFi, phone, car insurance, and overall life admin. He works, manages his own time and saves his earnings. He also is very helpful around the house.
He can cook and doesnt eat junk but usually can't be bothered to so I stock easy-to-eat foods and divide them into individual portions so they're available when he is standing there blankly staring into an open fridge. He wouldn't eat much otherwise and it's not an extra task for me as I do it for my lunches and all our leftovers anyway. We cook sit-down dinners only a few times a week and he is welcome to join us, but when we go out he is on his own.
Food might be a good first step for your family since that is where you are feeling the pressure. Maybe establish Sunday as family dinner night but other nights go out more, mix in casual/romantic/dinner-and-netflix meals, demonstrate that there are other options to mealtimes. If he cooks, stock his go-to ingredients. Ask him each week what he wants from the grocery for the upcoming week's meals he plans to cook for himself. (Without judgment - putting a frozen pizza in the oven counts as cooking.)
It is hard to balance wanting your adult child to be independent and wanting him to be safe, healthy and cared for. It's harder for him, as he wants both too, for his own life.
posted by headnsouth at 5:05 AM on September 22, 2017 [1 favorite]
He can cook and doesnt eat junk but usually can't be bothered to so I stock easy-to-eat foods and divide them into individual portions so they're available when he is standing there blankly staring into an open fridge. He wouldn't eat much otherwise and it's not an extra task for me as I do it for my lunches and all our leftovers anyway. We cook sit-down dinners only a few times a week and he is welcome to join us, but when we go out he is on his own.
Food might be a good first step for your family since that is where you are feeling the pressure. Maybe establish Sunday as family dinner night but other nights go out more, mix in casual/romantic/dinner-and-netflix meals, demonstrate that there are other options to mealtimes. If he cooks, stock his go-to ingredients. Ask him each week what he wants from the grocery for the upcoming week's meals he plans to cook for himself. (Without judgment - putting a frozen pizza in the oven counts as cooking.)
It is hard to balance wanting your adult child to be independent and wanting him to be safe, healthy and cared for. It's harder for him, as he wants both too, for his own life.
posted by headnsouth at 5:05 AM on September 22, 2017 [1 favorite]
Sorry, they not she. Too late to edit.
posted by bizarrenacle at 5:18 AM on September 22, 2017
posted by bizarrenacle at 5:18 AM on September 22, 2017
Response by poster: No worries on the pronoun.
Thanks for the thoughtful answers so far.
posted by Orlop at 5:54 AM on September 22, 2017
Thanks for the thoughtful answers so far.
posted by Orlop at 5:54 AM on September 22, 2017
Best answer: We are talking about an adoption situation here which has its own special needs in regards to attachment and development.
I have an adopted child with special needs who is 24. I buy the groceries and cook dinner, he makes his breakfast and lunch. When he is able to work he pays 25% of his income for rent and his own car payment and cell phone. I tell him when I'm going out and if he is invited and he tells me when he is going out.
In your case would set rules about what is family time and what is parents only time along with talking about how people need all different types of time with different groups of people. You can ask him what he thinks about paying or not paying expenses.
posted by SyraCarol at 5:58 AM on September 22, 2017 [6 favorites]
I have an adopted child with special needs who is 24. I buy the groceries and cook dinner, he makes his breakfast and lunch. When he is able to work he pays 25% of his income for rent and his own car payment and cell phone. I tell him when I'm going out and if he is invited and he tells me when he is going out.
In your case would set rules about what is family time and what is parents only time along with talking about how people need all different types of time with different groups of people. You can ask him what he thinks about paying or not paying expenses.
posted by SyraCarol at 5:58 AM on September 22, 2017 [6 favorites]
Best answer: My partner has an adult child living at home with mh issues about your kid's age (I am using kid here just as shorthand, he's 22). The most challenging thing is the "doesn't leave the house" stuff. Here are a few strategies which they use.
- Partner takes 25% off the top of SSDI payments for rent/bills/maintenance/etc. He is the designated payee for the kid and so metes the rest of the money out weekly so kid doesn't spend it all at once. Partner pays for cell phone on a minimal plan.
- Partner does most of the food shopping and they trade off with meal prep. Occasionally partner will give the kid money to go get food at the store.
- Partner does laundry but encourages kid to do his own laundry which he sometimes does.
- Partner encourages kid to go to local "clubhouse" for similar kids. Kid always refuses but door is open to him.
- Kid has mh support so goes to his own doctor's appointments/counseling
- Partner goes to a few NAMI support groups just to have a place to express frustrations about certain things that are annoying about this situation, the main one being that since kid rarely leaves the house (but is usually pleasantly involved with reading, video games, meal prep, research, whatever) it's hard to get his own time alone in the house. Kid is gregarious, often talking. Partner has switched his wake/sleep cycle to have a few quiet hours at the end of the day after kid takes meds and goes to sleep. Partner has a few "third places" where he goes when he just wants alone time or hang out time not with his kid.
I do not have kids and Have Opinions about encouraging the kid towards more independence but honestly he's light years ahead of where he was a few years ago. The biggest deal is that there are some things the kid wants to have in the house (notably his girlfriend with mh issues visiting who is not allowed over due to some serious boundary issues in the past) and partner is like "This is something you can have if you live in your own place" Kid is able to qualify for Section 8 housing and rarely shows any interest but it's held up as an option for him and to enable partner to have some boundaries about his own space.
posted by jessamyn at 6:26 AM on September 22, 2017 [3 favorites]
- Partner takes 25% off the top of SSDI payments for rent/bills/maintenance/etc. He is the designated payee for the kid and so metes the rest of the money out weekly so kid doesn't spend it all at once. Partner pays for cell phone on a minimal plan.
- Partner does most of the food shopping and they trade off with meal prep. Occasionally partner will give the kid money to go get food at the store.
- Partner does laundry but encourages kid to do his own laundry which he sometimes does.
- Partner encourages kid to go to local "clubhouse" for similar kids. Kid always refuses but door is open to him.
- Kid has mh support so goes to his own doctor's appointments/counseling
- Partner goes to a few NAMI support groups just to have a place to express frustrations about certain things that are annoying about this situation, the main one being that since kid rarely leaves the house (but is usually pleasantly involved with reading, video games, meal prep, research, whatever) it's hard to get his own time alone in the house. Kid is gregarious, often talking. Partner has switched his wake/sleep cycle to have a few quiet hours at the end of the day after kid takes meds and goes to sleep. Partner has a few "third places" where he goes when he just wants alone time or hang out time not with his kid.
I do not have kids and Have Opinions about encouraging the kid towards more independence but honestly he's light years ahead of where he was a few years ago. The biggest deal is that there are some things the kid wants to have in the house (notably his girlfriend with mh issues visiting who is not allowed over due to some serious boundary issues in the past) and partner is like "This is something you can have if you live in your own place" Kid is able to qualify for Section 8 housing and rarely shows any interest but it's held up as an option for him and to enable partner to have some boundaries about his own space.
posted by jessamyn at 6:26 AM on September 22, 2017 [3 favorites]
When I was living at home post-college, my mom handled meals pretty similarly to how it sounds like yours did. I was always welcome to join, but she didn't plan her meals around me and if she wanted to go out I was on my own. Also, if there were groceries that I wanted that she wouldn't eat, I was expected to buy them myself. Sometimes I went shopping for the household.
Other stuff: I paid for my car and entertainment expenses. I did my own laundry, took out the trash, and helped with random stuff around the house. I did not pay rent.
That said, I'm not on the spectrum, and I was out of the house a lot. Also, it was just me and my mom, which I think made things a bit simpler and necessitated a certain level of independence on my part.
posted by breakin' the law at 8:37 AM on September 22, 2017 [1 favorite]
Other stuff: I paid for my car and entertainment expenses. I did my own laundry, took out the trash, and helped with random stuff around the house. I did not pay rent.
That said, I'm not on the spectrum, and I was out of the house a lot. Also, it was just me and my mom, which I think made things a bit simpler and necessitated a certain level of independence on my part.
posted by breakin' the law at 8:37 AM on September 22, 2017 [1 favorite]
Best answer: It's difficult to have a firm answer for this because your child is an individual with unique strengths, but also unique challenges that make it difficult to set a firm expectation based on a generic "young adult" standard. Like, if they're having a flare of physical symptoms, it might make routine chores a challenge for some days, but not others. The autism may make home feel like a very compellingly safe place, but might pose challenges to the rest of the family who would prefer some time alone. The trauma and attachment issues make negotiating these kinds of expectations more challenging. Have you all had a good evaluation to help pinpoint where your child's skills are in housework, self-care, social skills, being able to navigate the community? That might help start to coalesce a plan for what to expect for household contributions. A neuropsychologist may be a helpful resource there.
Getting in contact with organizations that support adults in gaining more independent living skills would also be helpful. Orgs like the Arc or state specific autism societies often have resources in place for training, counseling and other services that can help you all negotiate a plan that will work for you all.
posted by goggie at 9:28 AM on September 22, 2017 [3 favorites]
Getting in contact with organizations that support adults in gaining more independent living skills would also be helpful. Orgs like the Arc or state specific autism societies often have resources in place for training, counseling and other services that can help you all negotiate a plan that will work for you all.
posted by goggie at 9:28 AM on September 22, 2017 [3 favorites]
Best answer: Do you have a "special recreation association" in your area? (try googling "special recreation association" with county/city/state/region names -- I'm guessing you're in the US because I recall you're a Quaker, or used to be). Alternatively, try "city community rec/park district inclusion services."
Around here, they provide frequent social outings for adults with special needs (physical, developmental, etc), along with clubs and leagues and so forth. And they also provide supports for a child or adult to participate in a regular community rec program (class, league, camp), up to and including a one-on-one aide.
It would probably relieve some of the pressure on you and give them more outside-the-house life and independence if they could sign up for a community rec class, with appropriate supports. Chess club or an art class or slow-pitch softball or curling or a cooking class. We have found community rec inclusion services to be a godsend, and one hardly anyone knows about and not enough people use!
posted by Eyebrows McGee at 9:45 AM on September 22, 2017
Around here, they provide frequent social outings for adults with special needs (physical, developmental, etc), along with clubs and leagues and so forth. And they also provide supports for a child or adult to participate in a regular community rec program (class, league, camp), up to and including a one-on-one aide.
It would probably relieve some of the pressure on you and give them more outside-the-house life and independence if they could sign up for a community rec class, with appropriate supports. Chess club or an art class or slow-pitch softball or curling or a cooking class. We have found community rec inclusion services to be a godsend, and one hardly anyone knows about and not enough people use!
posted by Eyebrows McGee at 9:45 AM on September 22, 2017
Best answer: And they also provide supports for a child or adult to participate in a regular community rec program (class, league, camp)
In my part of California, the local junior colleges provide similar programs, as "adapted physical education" (though the local JC doesn't provide aids), so that may be another search term.
posted by lazuli at 11:21 AM on September 22, 2017
In my part of California, the local junior colleges provide similar programs, as "adapted physical education" (though the local JC doesn't provide aids), so that may be another search term.
posted by lazuli at 11:21 AM on September 22, 2017
Response by poster: Dealing with a new POTS diagnosis, as well as autism and PTSD and everything else, must be extremely hard. What they need right now is your love and support and to know they are not a burden or a problem to you.
bizarrenicle, I want to pull this out to respond to it, because you're right in that that is exactly what we've been doing for all the time they've lived with us: working on helping them understand it's OK to want things from us, that it's not an undue burden to, say, run them to a doctor appointment even if it means some brainstorming and re-arranging of schedules, understanding that their place with us is permanent, that even if we have disagreements or are sometimes angry or frustrated we're not going to respond by abandoning them. This is part of why we sought legal adoption even though they were over 18 by then--to signal commitment and permanence. It's been long enough now that for our sake and theirs we think it's time to start pivoting toward them taking more responsibility.
They hope to move 600 miles away to a major city in the spring of 2019 to be with a partner who will be finishing a graduate degree at that time, and, while some of our desire is to reduce certain kinds of dependence on us, and certain immature coping mechanisms to make our own lives a bit easier day-to-day, we're also thinking of helping them prepare to be able to live more independently, and to be an effective roommate.
posted by Orlop at 8:46 PM on September 22, 2017 [3 favorites]
bizarrenicle, I want to pull this out to respond to it, because you're right in that that is exactly what we've been doing for all the time they've lived with us: working on helping them understand it's OK to want things from us, that it's not an undue burden to, say, run them to a doctor appointment even if it means some brainstorming and re-arranging of schedules, understanding that their place with us is permanent, that even if we have disagreements or are sometimes angry or frustrated we're not going to respond by abandoning them. This is part of why we sought legal adoption even though they were over 18 by then--to signal commitment and permanence. It's been long enough now that for our sake and theirs we think it's time to start pivoting toward them taking more responsibility.
They hope to move 600 miles away to a major city in the spring of 2019 to be with a partner who will be finishing a graduate degree at that time, and, while some of our desire is to reduce certain kinds of dependence on us, and certain immature coping mechanisms to make our own lives a bit easier day-to-day, we're also thinking of helping them prepare to be able to live more independently, and to be an effective roommate.
posted by Orlop at 8:46 PM on September 22, 2017 [3 favorites]
Response by poster: You all did a great job, thank you. This is exactly what I was hoping for. Ideas to shake us loose from feeling frustrated and stuck, and to help us approach talking to our 23 yo in a pro-active and supportive way rather than reactively.
posted by Orlop at 8:50 PM on September 22, 2017 [3 favorites]
posted by Orlop at 8:50 PM on September 22, 2017 [3 favorites]
Thanks for clarifying, Orlop. When I see people trying to get a disabled person to be more "independent," I react strongly. There's no such thing as independence. Did you build your house and car? Produce all the raw materials? Do you grow all your own food? No? Then you're not independent. Our society normalizes and renders invisible the interdependence of abled people while pathologizing the interdependence of people classed as disabled.
I get the sense you understand this, I just wanted to explain why it's a hot button for me. People prioritize disabled people's "independence" over all else, often at terrible cost. It has cost me more than I can say. Again, I don't think this is what you're doing. You're clearly genuinely supportive and trying to help your kid achieve what they actually want and I wish you and your family all the best.
posted by bizarrenacle at 9:08 PM on September 22, 2017 [7 favorites]
I get the sense you understand this, I just wanted to explain why it's a hot button for me. People prioritize disabled people's "independence" over all else, often at terrible cost. It has cost me more than I can say. Again, I don't think this is what you're doing. You're clearly genuinely supportive and trying to help your kid achieve what they actually want and I wish you and your family all the best.
posted by bizarrenacle at 9:08 PM on September 22, 2017 [7 favorites]
They hope to move 600 miles away to a major city in the spring of 2019
I would start with this and frame a gradual increase in expectations around preparation for being an effective roommate.
Start with thinking about all the things your 23 year old would need to be able to do that they haven't taken on yet. Figure out an order for gradually transferring the responsibility or teaching the skill.
My adult child is 27 - lived with us in her early 20s and then moved to a supportive community. She has had some grand plans that turned out to be way beyond what she was capable of but at least the ambition gave us a chance to encourage as much independence that was she could manage. For example, she occasionally had part-time jobs but was never able to maintain them (for good reasons). We gave her an allowance but then expected her to budget and spend her money so she developed those skills even though she wasn't earning the money herself.
Things that might be good for your 23 yo to (gradually) take on if they haven't already
- doing their own laundry
- keeping their space clean
- doing a fair share of cooking and dishes
- doing their own shopping
- doing family shopping
- paying their own bills (even if you are providing the allowance to fund it)
- making their own appointments
- managing their own medication
- know how to get around without relying on you (driving/public transit)
- making and following through on activities that are a regular commitments if not a job (classes, organized social activity, volunteer work)
Hope this helps! It is so tricky to figure out the right balance between pushing and supporting. I really respect your commitment to being there for emotional support at the same time that you are encouraging them to move towards a more responsible adult life. These kids may never get to full independence but at least we can support them in growing into their full potential.
posted by metahawk at 10:19 PM on September 22, 2017 [1 favorite]
I would start with this and frame a gradual increase in expectations around preparation for being an effective roommate.
Start with thinking about all the things your 23 year old would need to be able to do that they haven't taken on yet. Figure out an order for gradually transferring the responsibility or teaching the skill.
My adult child is 27 - lived with us in her early 20s and then moved to a supportive community. She has had some grand plans that turned out to be way beyond what she was capable of but at least the ambition gave us a chance to encourage as much independence that was she could manage. For example, she occasionally had part-time jobs but was never able to maintain them (for good reasons). We gave her an allowance but then expected her to budget and spend her money so she developed those skills even though she wasn't earning the money herself.
Things that might be good for your 23 yo to (gradually) take on if they haven't already
- doing their own laundry
- keeping their space clean
- doing a fair share of cooking and dishes
- doing their own shopping
- doing family shopping
- paying their own bills (even if you are providing the allowance to fund it)
- making their own appointments
- managing their own medication
- know how to get around without relying on you (driving/public transit)
- making and following through on activities that are a regular commitments if not a job (classes, organized social activity, volunteer work)
Hope this helps! It is so tricky to figure out the right balance between pushing and supporting. I really respect your commitment to being there for emotional support at the same time that you are encouraging them to move towards a more responsible adult life. These kids may never get to full independence but at least we can support them in growing into their full potential.
posted by metahawk at 10:19 PM on September 22, 2017 [1 favorite]
Having considered it for the day I have decided to clarify my own previous comment. I am also an autistic adult bizarinicle. I am 37 and asperger's in females wasn't a thing when I was growing up. Thus I spent the early part of my life being told to grow up, act my age, not be a baby etc. Emotional regulation especially came late to me and I was humiliated multiple times in my early employment for bursting into tears at inconvenient moments.
My husband, ex partner (with whom i have a child) and father all also have ASD and we were all labelled as immature, useless or hopeless in ways relating directly to our neurological development as children, teens and young adults. The self hatred this leaves can take a lifetime to leave behind. Ones entire frame of reference for living feels at odds with ones own lived experience. For example I knew myself to be a complete idiot because that painfully loud music wasn't even loud according to everyone else, that multi step task I couldn't keep track of was simple, it was not normal for tears to start because of a smell or an unkind interaction. Everyone else's opinions become more important than one's own inner truth and that way lies misery.
This is why the "deduct a third of the age" advice was so helpful to our family - all of us have suffered low self esteem due to our repeated failures to meet the misplaced expectations of other people based on our biological age, gender etc.
So when I deduct a third of my children's ages I don't do so to condescemd or control them, to infantalise them. It is where I set my own expectations. My 11 year old is more like a 7 year old in some specific ways, but she is still treated like an 11yo, just with slack cut in the directions she needs. It is not about preventing the person from adulting, it's about seeing the slower-to-mature neurology as normal and valid and managing one's own expectations rather than expecting the individual in question to somehow be able to be a certain way or handle certain tasks just because of their biological age.
posted by intergalacticvelvet at 12:45 PM on September 23, 2017 [1 favorite]
My husband, ex partner (with whom i have a child) and father all also have ASD and we were all labelled as immature, useless or hopeless in ways relating directly to our neurological development as children, teens and young adults. The self hatred this leaves can take a lifetime to leave behind. Ones entire frame of reference for living feels at odds with ones own lived experience. For example I knew myself to be a complete idiot because that painfully loud music wasn't even loud according to everyone else, that multi step task I couldn't keep track of was simple, it was not normal for tears to start because of a smell or an unkind interaction. Everyone else's opinions become more important than one's own inner truth and that way lies misery.
This is why the "deduct a third of the age" advice was so helpful to our family - all of us have suffered low self esteem due to our repeated failures to meet the misplaced expectations of other people based on our biological age, gender etc.
So when I deduct a third of my children's ages I don't do so to condescemd or control them, to infantalise them. It is where I set my own expectations. My 11 year old is more like a 7 year old in some specific ways, but she is still treated like an 11yo, just with slack cut in the directions she needs. It is not about preventing the person from adulting, it's about seeing the slower-to-mature neurology as normal and valid and managing one's own expectations rather than expecting the individual in question to somehow be able to be a certain way or handle certain tasks just because of their biological age.
posted by intergalacticvelvet at 12:45 PM on September 23, 2017 [1 favorite]
I recommend sitting down and talking with them about what they can and should be doing to contribute to the family. They should definitely not be creating more work like laundry or dishes. If they can contribute financially, I recommend it - it helps people feel a sense of adulthood.
posted by Mom at 6:50 PM on September 24, 2017
posted by Mom at 6:50 PM on September 24, 2017
Personally, if the kid has a job or is receiving disability payments I would ask for rent and put the money in a savings account for them. Maybe they get it when they turn 30 or some other far off goal.
If they don't have a job I would try to get them to volunteer at an animal shelter or foodbank - two places where you don't have to interact with people if you don't want to.
I don't know if you know this but a huge amount of young people today are not doing the normal things we did - get a driver's license at 16, date with intention of getting married, etc. So your kid has a lot on his plate - please don't compare him with meeting the stages of "normal" young people today because normal has really been blown apart.
It's really important that you make sure he is taking care of his teeth correctly. A lot of people on the spectrum have problems with that and it is so expensive - it will financially ruin him if it goes bad when he is on his own - I would not leave it up to them - I would want to make sure they are going to appointments and make sure you get a full report from the dentist and explain to the kid that dentistry is a team thing - you are on his dental team and you are there to make sure the dentist does a good job and that the kid understands what they need to do. Make sure the kid does not feel like they are berated at the dentist. Don't let them feel like they are alone in this and that it is some kind of "test" they have to pass. Also be very clear about what foods and drinks are bad for teeth - no Mountain Dew! Don't assume they will know how to take care of their teeth because it comes naturally to you.
There is a question here recently about a young man who avoided the dentist for years.
People on the spectrum have trouble socializing - and yet they are expected to have a stranger have complete access to a private orifice - - don't know how to explain how horrible this feels.
Another thing is that people on the spectrum often hate using the phone. If you have to make dental appointments til this kid is 30, I would. Don't try to win some war by getting them to use a phone. You could use that tactic on anything else but the dentist, IMO. Because if they don't go to the dentist it is really you who are going to pay in the end by helping them pay for caps, etc.
In other words - see if you can find a dentist who has experience with people on the spectrum or even have them go to a dentist who specializes in children. Ask the dentist if it would be appropriate if he takes Valium (if he does have anxiety - I'm just guessing he does). It would not be bad if you tried to make dental health one of his obsessions - if he is having problems with dental health ask him to research dental health and nutrition or ask him to research xylitol and ask him if he agrees with the findings - or something like that to get him interested in dental health early.
posted by cda at 9:04 AM on September 25, 2017
If they don't have a job I would try to get them to volunteer at an animal shelter or foodbank - two places where you don't have to interact with people if you don't want to.
I don't know if you know this but a huge amount of young people today are not doing the normal things we did - get a driver's license at 16, date with intention of getting married, etc. So your kid has a lot on his plate - please don't compare him with meeting the stages of "normal" young people today because normal has really been blown apart.
It's really important that you make sure he is taking care of his teeth correctly. A lot of people on the spectrum have problems with that and it is so expensive - it will financially ruin him if it goes bad when he is on his own - I would not leave it up to them - I would want to make sure they are going to appointments and make sure you get a full report from the dentist and explain to the kid that dentistry is a team thing - you are on his dental team and you are there to make sure the dentist does a good job and that the kid understands what they need to do. Make sure the kid does not feel like they are berated at the dentist. Don't let them feel like they are alone in this and that it is some kind of "test" they have to pass. Also be very clear about what foods and drinks are bad for teeth - no Mountain Dew! Don't assume they will know how to take care of their teeth because it comes naturally to you.
There is a question here recently about a young man who avoided the dentist for years.
People on the spectrum have trouble socializing - and yet they are expected to have a stranger have complete access to a private orifice - - don't know how to explain how horrible this feels.
Another thing is that people on the spectrum often hate using the phone. If you have to make dental appointments til this kid is 30, I would. Don't try to win some war by getting them to use a phone. You could use that tactic on anything else but the dentist, IMO. Because if they don't go to the dentist it is really you who are going to pay in the end by helping them pay for caps, etc.
In other words - see if you can find a dentist who has experience with people on the spectrum or even have them go to a dentist who specializes in children. Ask the dentist if it would be appropriate if he takes Valium (if he does have anxiety - I'm just guessing he does). It would not be bad if you tried to make dental health one of his obsessions - if he is having problems with dental health ask him to research dental health and nutrition or ask him to research xylitol and ask him if he agrees with the findings - or something like that to get him interested in dental health early.
posted by cda at 9:04 AM on September 25, 2017
Another resource you all may find helpful: The Casey Foundation has put together a really helpful resource for young adults transitioning from foster care to adulthood. As part, there is a free inventory and linked ideas about how to practice and develop adaptive skills in those areas that need more support. All can be accessed at this website.
posted by goggie at 12:14 PM on September 25, 2017
posted by goggie at 12:14 PM on September 25, 2017
This thread is closed to new comments.
posted by parmanparman at 10:43 PM on September 21, 2017 [1 favorite]