No One Wants To Go There

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My aspy son and autie daughter are yound adults now. They're doing very well, except for when my daughter gets really freaky and noisy and in my son's space. That's a problem I'm working on. Aside from that we have a very stmmy household. We have spectrum friends, we all overwhelm each other and then have to spend down time to recover but that's our temperaments.

So, when my husband and I die, what will happen to my kids? I think they'll send my daughter to the dog pound and my son will not know where to turn without us as his loving safety net.

I'd put this on the parents' forum but I don't think they want to go there. Parents don't have much to say but I've heard from the adult kids who are left to make it on their own.

Then there are the cases like my own childhood. It would be mentally healthier for me to live in a packing crate than with my parents.

What do we do? There's a train wreck heading full speed to us.

Not sure of the abilities of you son or daughter, but can you move your family into a place where they have their own living space and you have yours?

I know someone who pretty much takes care of one of his sons/wife/autistic son/daughter.
Now, this person inherited a good bit of money, so this in not the general means by which I think most folks could solve their family issues.
This person has spent a bit of this money buying homes... some he rents... some he and his family live in.

Currently, he lives on several acres with two houses close to each other.
The friend lives in a small cottage (his preference I believe), and the son & his family live in the larger house.
There is still interaction, generally on a daily basis, but either party can say, "I need to be alone", and it is much easier with the separate living centers.

I also know of a couple of families that built those 'mother-in-law' units specifically for their kid(s) to live in.

Perhaps buying a duplex or triplex?

I just see this as getting your kids out on their own, but not too far out on their own.

I won't be of much value in the parenting issue concerning the 'all living together' issue, unfortunately.

It's not so much getting them out on their own, as keeping them in good lives after their parents are no longer there for them. The county agencies sure don't have good answers. We can put another house on our acreage for my daughter but that doesn't address their future.

Like I said above, I do not know your daughter's situation concerning her autism.
If she cannot live independently and her brother isn't able to take care of her if you all die before them, then all I know is some sort of group home situation, which I am not at all familiar with.
I mean, other than leaving behind a large trust to pay for caretakers (basic life stuff as well as financial/legal) for the rest of her life.

I wish I had better things to tell you, but this is not actually an area of life I am familiar with.
I have a sister who's needs are being met my our mother (who will probably not be able to keep doing this for too many more years).
My sister's problems stem from her depression and other issues... not due to something like autism. So this is different, although I don't know how she will fair once our mother is gone. I know I won't be able to take care of her needs.

I wish other folks here could come up with some better ideas for you.

Basically, it's about having someone else around to watch after them to the degree they require this over-seeing... right?

This takes the commitment of other family members who are likely to be around for the life of the individual in question, or large financial resources either from the family, a kind stranger, or the government.

I'm just sorta laying this out to see if it spurs any fresh ideas.

I hope that neither you nor your husband is in imminent danger of death, but the first thing you should do is make sure your will is in order. Be especially sure that your will spells out who will assume legal guardianship of your children in the event of your deaths (if either of them is still a minor, I wasn't sure what you meant by young adult).

Assuming that you and your husband are both in relatively good health and expect to live for many more years, you should start identifying which services you think your children would need to live independently, and contacting service agencies about how to obtain these services. Think basic needs: how will they come up with rent (work placement, disability income), how will they obtain food (meal services, all-day support staff), etc. Write everything down and involve your children in the process as much as possible, so that they might be able to advocate for themselves in the future. How effective of advocates for themselves they can be is determined by their profiles of abilities, of course. Teach them whatever life skills they're able to learn: cooking, managing a checkbook, cleaning and washing chores, etc. (Sorry if you've already thought of all that, but you'd be surprised how many parents of NTs forget to teach their kids this stuff.) Even if they can't handle these life skills on a regular basis, it's good for them to know what to do if their regular service providers can't assist them for a day or two. I'm sure that there are many other preparations that your spectrum friends could suggest to you, as well.

Can't predict your daughters future with autism.

Is she low functioning and to what severity? High functioning?

If something were to happen to you right now, your daughter would probably either be put up for adoption or go to an orphanage unless you have family members that could take her. Do you have family members that would help you if you passed away?

Maybe you are also thinking about long term too? Will your daughter make it on her own or not require your help when she's an adult?

That I can't give opinions without knowing the severity. You make her sound young. I'll tell you this. ALOT has changed for me since I was young and I was on my own to figure out stuff. Things are still getting better while I've noticed some things are either getting worse or I've become very aware of things I wasn't aware of before.

I appreciate your laying things out like this. I just had a call from the new guy from the county who is supposed to help me find solutions for my daughter. I told him that he's probably a very nice guy but all he has to offer is a box on bandaides for her and not any thing I can work on to ensure a good life for her. Maybe something will happen if I keep trotting out the same worries over and over again.

I'm a 26 yr old Aspie female. I just want to say I wish I had a parent as attentive and thoughtful as you are. Good luck! I hope things work out.

Becky,I dont know how much you know about these "dogpounds" but I used to work in one and you concerns are very,very justified.I burnt out,not from the "clinets" but because of the illogic and lack of empathy of the people who worked in management.I dont know how it is in yor area,but MN has a very novel approach to staffing these residences...they import their workers from Libera.I cant hardly understand them when they talk but the clients find communicating with them impossible.Another issue is the pay is not great and they are so desperate for workers that they have very low standards in hiiring and never seem to fire anyone for not doing their jobs.It seems little more then a paycheck for sitting around watching TV or talking on their cell phones.It's very depressing.Their perception of the guys living in the house were either as furniture to step over or "inconveniences".I would say that only 1 in 5 staff actually think of them as human beings and even their hands are often tied by the companies claims that.."we just dont have the money to get the client a new pair of shoes or enough time to involve them in activities they are interested in."
I stuck it out for 4 years becaue I thought I could make some small positive changes in their daily lives(like cooking descent meals vs frozen pizza and hotdogs),but I think the best staff get pushed aside for advocating(called making waves)or from burn-out of doing all the work,while others sit around watching TV.

Point being...you are justified in your concerns and I would be happy to gve a wake-up call to the parents who think they will just be handing their kids over to "caring and compassionate" individuals...they are in the minority from what I observed.

I am sorry about the negativity of this post.I did join your web-site and hope to help find some more positive solutions.

AS to the poster who mentioned the "living skills" teaching.This is priceless.My parents kicked me out at 16 and I hadn't a clue how to take care of mysef.It would have taken off a lot of stress if I had been taught,cooking,budgeting,how to fill out a check,etc.

I don't know if my experience will help at all, but here goes:

Our daughter with autism also has mental retardation, bi-polar, OCD, and late developed a seizure disorder. She is non-verbal and was violent (and can still be if prodded enough) (family motto: Let the Wookie win) All the rest of our kids were scared stiff they would end up with her and I was being beaten upon on a regular basis. Yes, you worry.

Before she graduated from high school, we got together with some other parents of severely autistic children and formed a non-profit group Autism Community Services. The group floundered for a few years (every time I thought I knew what had been decided and acted on it I got reproved. I wasn't the only one there with asperger's so we were fairly clueless for a long time) We spent a few years petitioning the government to give us funding to tailor programs for our children instead of trying to stuff them into one size fits all group homes and having them fail over and over again. We got some of the money and hired a director who understood working with the legislature and I got shut out of trying for private grants. Then we got some more money and about half of our kids got companion homes with the companions receiving a decent wage. My problem with the companion home was that it was no different from our kids living at home albeit with younger people. If we couldn't live with our daughter, how could someone else? More meetings, more petitioning, and some more money came. The negotiations from the first batch of money meant we were next because by then our daughter had graduated and she was cutting up our mortgage and letters and library and escaping the house to make coffee in other people's houses because she had used up the can of coffee a day already etc. Every job we got her, she figured out how to be expelled from. We had to emergency place her for two months in a state institution before it got closed down.
We bought a duplex in another town next to a natural food store and a few blocks from a hospital and on a bus route (the bus that went by our place in the county had just been cancelled) So we were ready for the companion home.

Politics: some of the members did an end run around us, saying what we had was not a companion home as the companion did not own the home and we expected the companion to live on the other side of our daughter. We did not get the money.

We left that meeting seething. What were we going to do? NO ONE could live with our daughter. She did not understand that other people owned things they did not want incorporated into her art projects and was intensely destructive.

We remodeled her side of the duplex (took out the stove and range and installed a microwave) carving out an office in her living room with an outdoor door and locks to keep her paperwork in. Built a fence with an alarmed gate, put in a hot tub, an outdoor bird cage, swings etc. I painted it with bright, contrasting colors so she would be able to see the lightswitches and knobs and to have it cheerful.(why is housing for the disabled so drab?) Put up birdhouses and whirligigs. Well, anyway.

When she came back from the emergency placement we moved her into the duplex. I lived there in the day. My husband lived there at night. Slowly some of the kids got caregiver licences so sometimes one of them would spend the night. We hired a variety of people who came and went, had a number of gross emergencies, and saw a soon future of other kids graduating and moving away. We sold our beautiful house in the county with woods, orchard, pond, chickens, workshop, newly remodeled kitchen (can you tell I'm still sad about it?) and moved into the other side of the duplex, going from 4,000 sq ft to 900. And then the kids who had moved out, moved back in. We had one kid sleeping in the office, one in the garage, one, well, lots of extraneous details. Sorry. Oh, and we had to play a lot with her medication before we found a combination that works well for her.

Eight months after we moved, the ARC lawsuit that had been going on for a decade settled, and the federal government audited the DDD, and suddenly we got the funding to hire a companion for our daughter and give the companion respite care so she could go grocery shopping or whatever you can't do with our daughter (which is almost everything)

So we hired a companion, and supported her for a few months until the government finally figured out how to send her a paycheck. She sleeps on our daughter's side and spends most of her time there online playing WoW, and her stuff is on the other side of the duplex and safe.

Everything on our daughter's side belongs to our daughter. No one is screaming "Not THat!" at her anymore. A steady supply of paper appears on the table every few hours. She leaves the house once a day to gather brochures at the mall to cut up and buy coffee and sometimes lunch. She is never ever urged to leave the house again. She gets in the hot tub. She says hi to the birds and beats on their cage until they flutter around. No one tries to drink coffee in front of her. No one tries to make her go to work or outings with other disabled people. She is happy now When we give the companion a break, our daughter comes and snuggles with us while we watch TV.

Her SSI payments help with the mortgage and in our will, the house goes to her. No one will be able to make her move. For several years the house was willed to the trust for her, but laws changed. Best Beloved quit his job to start his own business so we could fund the trust, and we ended up with a 60percent cut in pay and nearly a million dollars in debt, but if he keeps his health we should be able to start funding it in five years. We began a family foundation that also has a fund (theoretically) that will help the kids keep track of our daughter. We all meet twice a year and catch up on each other's lives, interview the companion, go over and visit our daughter (we now live three blocks away) and talk about our wills and insurances. We carry lots of insurance. The kids know and approve of the fact that our daughter gets everything, as that helps insure that they don't become the companion. The companion loves her job and our daughter loves her.

Our daughter turns 32 in a few weeks.

Tonight is another Autism Community Services meeting. We have been petitioning the legislature for differential pay for the providers as our kids are Harder! to take care of, and the union is fighting it, live goes on. We still have to meet with the social worker from time to time and have paperwork or health issues to deal with from time to time. We take her to church where everyone tries to love on her as she brushes by to get her coffee and the papers from Sunday School. Once a month I stay the weekend so the companion can LARP in the woods. So we're semi-retired instead of fully retired from caring for our daughter. But she has a life all of us can live with now.

lelia, that was in interesting story. I see your problems are not easy either. It's good that you got parents together. But someday you'll be gone. Will there be people who continue to know your daughter as a person and not just a job?

Sometimes I think what would work best is to buy in apartment complex. My daughter could have her apartment as would other disabled people in some of the units. Good, reliable care givers could have other units with affordable rents and some family members could live in other units to keep everyone understanding and caring about each other.

Maybe an apartment complex like the could be self supporting with the SSI that the kids get and the care giver money that some of the states provide. Maybe if everyone knew each other well, they could make stuff, like tee shirts, or stim toys and sell them on a website or brainstorm to do other businesses.

If this idea were successful, then the ones who started it could all be consultants and write books about it.

From the opposite side, i'm 21 and i still live with my mother. I worry about what I would do if something happened to her. I'd probably be ok with help from my sister but it worries me a lot.

Wow!
I'm impressed at the responses!

Thanks for sharing your stories.

I hope this help Becky out.