When they are not able to live independently....

Discussion in 'Parent Emeritus' started by MidwestMom, Apr 11, 2011.

  1. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    We just got a huge report for Sonic (our almost eighteen year old son). We took him for a very intensive evaluation so that he could get services when he reached adulthood (sigh). For a long time we hoped he'd be able to live independently, but that clearly is not going to happen anytime soon or possibly forever. His diagnoses are autism/cognitive disability not otherwise specified (his IQ is normal, but his life skills and social skills and academic levels are all way below normal).

    We are going to get guardianship of him. Ok, then what? We can't live forever. I am already 57 and hub is 55. Realistically, my other kids will marry and have kids of their own and it's unlikely any will want him to live with them. That leaves assisted living or group homes. He is a happy young man who will gladly accept assistance. In fact, he prefers it. However, hub and I are not sure what to do.

    Has anyone been in this situation? What did you do about your child who is really not capable of living on his own? He does not date or want to ever marry...so hoping for a good match is currently not going to happen...lol.
  2. slsh

    slsh member since 1999

    MWM - we are facing the same thing with- Boo. I do not expect one of our able-bodied kids to take on the responsibility of having him live with them, but I do hope they will play an active role in supervising his living situation to make sure he is well cared for once we're gone.

    For now, he lives at home, and that is the plan until we retire and move (and we're just crossing fingers that our bodies hold out that long). At that point, ideally I'd like to find a group home (not institution or nursing home, though that is the level of care he requires) that does more than feed, change, and wash him. I want him to have a good quality of life, but he is 100% dependent on those around him, which makes me queasy when I think about delegating that role (recent elder abuse-cam case in point). Because IL is *not* where we wish for any of us to end our days, I really haven't spent a whole lot of time looking into what is available here. I do know there is 1 excellent program in the city, but again, waiting list is measured in decades.

    There was someone *many* years ago, I think on the board though it could have been the our-kids listserve, who had... don't quote me 'cuz memory is failing, but I think she had twin boys with autism. They were young, less than 12, but she was already networking with- families in the community and making plans to purchase a home where they could live as adults with peers, with supports provided not only by the state but by the collective group of families as well. It was really quite a remarkable plan, well thought out, and didn't depend solely on state-provided services. A village concept at its very best.

    I think if you're looking at a group home setting or assisted living, you need to start investigating now and get his name on lists. There are some good programs. I was told we needed to put Boo's name on a list by age 12 in order to hopefully secure him a spot in his mid 20s. It was simply beyond comprehension to me - not the wait, but the thought of him living with- "strangers". Does that make sense? My impression is that for an adult who has some functional skills, the availability of placements isn't as scarce, but you definitely need to look at what is available.

    I do think conversations with- your other kids re: who would be willing to assume role of guardian (not just in name, but making sure that your son is being well cared for) is a good idea. Hopefully it will be a group effort between them all.

    It's a huge weight, worrying about the well-being of an adult child who will not be able to care for themselves. I think I'm still ostriching it a bit.
  3. Hound dog

    Hound dog Nana's are Beautiful


    difficult child might yet surprise you. At 18 Travis was no where near ready to live independently......and we were having many of the same thoughts. I scoped out the area and while there are services, they're all geared toward low IQ and physical issues. Good for those difficult children, bad for Travis as he wouldn't do well in that environment. Across the alley from us is a halfway house of that variety....very nice set up, family run. Since that wasn't an option......and I couldn't afford some other options, such as supervised apartment living......I started talking with family, which of course are his sisters. So at 18 we had a plan in place for IF he could not learn to live independently and something happened to husband and I.

    At 23, he scared me silly and went off to college where he had to live in the dorm. It was a disability dorm he shared with another disabled student and 2 easy child students who were there to help them. I figured even if the college thing didn't work out, he'd never have another opportunity for such a safety net to attempt living away from home independently. Stepto2 lives near the college and was his emergency contact. He far exceeded all of our expectations, including his own. It wasn't easy as he didn't give himself much budget to work with, but he did it successfully. That experience alone caused him to mature fast in ways he simply could not do while living at home.

    husband is currently working on his disability so that he can move into his own apartment. Disability will be his safety net as their aren't many places in town he can work given his disabilities. We would never even have considered it possible at 18, 19, 20, or even 21........by 22 he was showing motivation to strike out independently by filling out college forms and loan forms ect. I neither discouraged nor encouraged. I figured by that age if he wanted it bad enough, he'd make it happen.....took him a while but he did it.

    Even so, easy child will always remain his safety net as well. As his condition is constantly changing.

    Just knowing there is someone to step up to the plate........is an enormous relief.

  4. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Thanks, both of you.

    I do not see my son being able to live independently. My kids have agreed to oversee his services, but they don't really know what that means and neither do I. would like to see him show a zest for independence one day, but I really can't count on that happening...and, yes, we have already started looking into disability and work programs for him.
  5. DammitJanet

    DammitJanet Well-Known Member Staff Member

    mwm, we never thought billy could live on his own either and so far he hasnt truly left our house other than to live with Jamie for almost a year. Tony is terrified at the mere thought of it. I am not. I think he has grown by leaps and bounds in the last couple of years. At your sons age he wasnt interested in girls or marriage either but now he is actually actively in a relationship that is on a serious course towards a long term commitment. I really think this girl will be the more stable one I guess you would say but thats okay. They will probably fill needs for each other.

    It took Billy until he was 26 until he got a true good job, 27 until he got his drivers license but now he is doing well. By the end of this month they are supposed to make him manager of his own store.
  6. Nomad

    Nomad Guest

    I don't know. We have some similar issues...our daughter struggles terribly, but with some support, personal effort and if she takes her medications... does ok.
    She has an average to above average IQ and this helps a little. We haven't found the answers.
    I do understand there is more availability re: group homes for the developmentally disabled. And if he is willing to cooperate, etc. this might be a good thing for him.
  7. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Thanks for he hope, Janet.
    Sonic could pass for developmentally disabled, yet I think he could handle his own place too, if a caseworker helped him out. He has typical autistic defictis (albeit high functioning). He still does not shower...ever...unless forced or bribed because he doesn't care how he looks or smells (that will go over well at work, even if it is a sheltered workshop...and he will probably be places in the regular community). He does not know how to hang onto money at all. I am not sure he'd seek help for himself if he got sick. He needs a job where he will not have to multi-task because he simply can't. Those are his issues...
  8. Hound dog

    Hound dog Nana's are Beautiful

    His issues sound very similar to Travis. Travis also can't organize......not that he won't.....he can't, it's brain injury related. He also needs short directions in a list of no more than 1 or 2 things at a time. This is on top of the vision issues which complicate it more. And he shocked us by doing a good job both at walmart as a cashier and krogers as floor maintenance. The personal hygiene has also improved with age. It's not perfect......but is so much better than it was.

    Travis was motivated to work because once you reach a certain age around here other than room and board.........you buy it yourself or do without. Granted, he wasn't motivated until about 18. lol

    Hardest part for me..............was letting Travis try and fail or succeed. I've never thought of myself being over protective of him......cautious to some extent, but not over protective. He had a fairly normal childhood. But when it came to venturing into the world........scared the hades out of me and I wanted to tell him he couldn't.........but I bit my tongue and he showed me like every other thing he managed to achieve that Hey Mom, I can do this too. In many ways he's not that different from anyone else.......just takes him longer to get where he's going in life is all, and sometimes he has a unique way of getting there.

    Oh.......and Travis can't multi task either........yet he managed to cashier, don't ask me how.........that was one of those well heck just let him give it a shot moments. lol
  9. rlsnights

    rlsnights New Member

    For those of you with compliant cognitively limited or disabled adult children (ours is totally non-compliant so this kind of planning was futile for us), there is a growing movement across the country to create supportive housing and employment communities for adults with a wide variety of disabilities. Many offer on-site social work staff and medical care or coordinate medical care in the community. Here are some links for you to explore that talk generally about planning for your adult child's long term supportive care and a couple of links to organizations that create these communities and one on-line forum for parents of disabled adults.

    Our extended family includes a mentally retarded 80 year old uncle of my spouse. His care was passed on to his brother F. (my spouse's dad) and is now being handed off to one of my brother-in-laws C.. They live in a very small mountain community of about 2,500 people but it is within 20 miles or so of three or four other small communities. The arrangement they have come up with is that the disabled uncle D. lives in a small trailer park in a mobile home purchased by his parents long ago and renovated or replaced at least once I think. It is located in the same community but on the far side of town about 2 or 3 miles away from the person providing his support. D. is capable of living on his own as long as he doesn't have to handle money, oversee his own medical care, drive, or make any significant decisions like where he's going to live. The family network has a routine set up where they take him grocery shopping once a week (or do it for him), serve as payee for his small disability income, make sure he and his little dog get the medical care they need, drive him on the rare occasions that he needs to go somewhere (usually family gatherings) and that repairs/maintenance on his home are handled. He is completely content to sit in his little trailer and watch TV and movies (westerns), take his dog on short walks, visit with neighbors a little and spend short periods visiting with family. He is really very happy and often leaves family gatherings fairly quickly because he's just not comfortable with all those people. He tends to look confused a lot in those settings.

    My good friend L. has an adult child with Asperger's. He's 40 now and lives independently. He is a computer geek and Japanese anime lover. He would have lived in his parent's home forever. They decided that they felt he could manage on his own with only a small amount of assistance from them (mainly advice) so when he didn't take their hints that he should move out (he had a job which they had helped him get) they changed the locks and didn't give him a key. They told him they were happy to have him stay but he would have to come and go with them. He had found an apartment and moved out within 2 weeks and has been on his own ever since. He only learned to drive last year. Up until then he went everywhere by bike and was happy to do it. Or he hitched rides with his (many) friends. He has maintained close contacts with them (my friend is now widowed) and may move back in with his mother now that her health is deteriorating some and he has been unemployed for several months.

    Don't know if those solutions/stories will be helpful to anyone but thought I'd share them along with the links.

    Good luck to us all,


    Link to an article about planning with suggestions for agencies to contact and other good info

  10. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Thank you all very, very much! Patricia, sooooooooo helpful. I appreciate the time you took.
    Hugs to all,
    Pam :)
  11. rlsnights

    rlsnights New Member

    You're welcome. Helps to have a computer and unfettered access to search engines...and, unfortunately, the personal experience to draw on when I go to sort the results.

  12. MM,

    We are in the same place that you are, so I have read these posts carefully. I also just came upon an article in today's New York Times. Here's a link : http://www.nytimes.com/ref/health/healthguide/esn-autism-reporters.html?ref=health

    There is a link to Autism Speaks that has a very comprehensive transition plan with links for various states. I know this will keep us busy for a while! husband and I are both in our late fifties , and this planning is foremost in our minds. Maybe a little more in mine than husband's... but he is coming along.

  13. Hound dog

    Hound dog Nana's are Beautiful

    I'll be bookmarking these too, never know when such things come in handy. Thanks!
  14. JJJ

    JJJ Active Member

    We have several group homes in our town. We actually know the residents at one rather well. Six men, all between 25-45ish, and they are very happy with their home. Many have been there for years, staff seems very nice and one of the staff that left years ago still comes back and visits frequently. The only complaint that they have voiced to me is that they really wish someone would hire them to work. They know adults work and they want to so badly but between the economy and the govt cuts to supported workshop funding, there isn't anything for them to do. Several of them speak with pride of the day they moved out of their parents home. Even though they went into a group home, they see that as a clear step to adulthood.
  15. HaoZi

    HaoZi Guest

    That sounds something like a place within driving distance from us
  16. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Thanks again!

    We already have the Department of Rehab Developoment ready to place Sonic in an appropriate job. So that should be taken care of. We have group homes too. I'll have to check them out.
  17. DDD

    DDD Well-Known Member

    Just this year the Rehab people put difficult child in touch with a Job Coach. She is a lovely woman although she hasn't been able to place him. They help look for jobs and provide a trainer on the job site to make sure the difficult child knows how to do the work expected.

    Less than two months ago I discovered that the Job Coach works for Volunteers of America and
    they have two apartment complexes in our community. They are not assisted living but the rent can be as low as zero or up to $300 a month. Each has a manager on site during the day. The smaller unit costs $300 but they have the Job Coach site there and when she leaves work at 5 a man comes on duty and stays until 11. The residents usually, and on a voluntary basis, meet in a room for lunch. The room is open until 11 for socialization. We are hoping that difficult child's psychiatrists and evaluations make him eligible....and so is he!

    Perhaps that organization has something in your community. Worth checking out. DDD