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DO NOT QUOTE PLEASE!

I don't even know where to go from here.    Son with autism came home from college end of the quarter, December of 2019.    He said he needed a quarter or two off.

Now he says he won't go back for too many reasons to list here, so please don't think we haven't explored the reasons why.   My purpose of this post is not to get him back to college, I have given up on that.

But here we are, almost a year later, and he has done nothing.    No job, no attempt at a job, no school......everything we mention he has 100 reasons why it won't work.  He won't help with things without whining about how it isn't done the right way anyway, blah blah blah.

His self esteem has bottomed out.   He flat our refuses to go to therapy, look at meds, etc......and gets mad at me when I mention it.   He said he would apply for a couple of menial jobs around here but he hasn't and from what I can see, won't.

He is 22 years old.

I will NOT throw him out on the streets, If you have something constructive to add,  I would welcome it.   If you just want to chastise me for being a bad parent, please don't.   I am already a mess about this entire thing.  

I am starting to look at organizations that help, like Voc Rehab but specifically for those on the spectrum.   If you have any suggestions along that line, I would be open.

THANK YOU!

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I know there are some boarders who’ve gone through this. Hopefully @Ktgrok and @8FillTheHeart will see this and offer support and resources. I remember ktgrok was able to get her son involved in a passion which helped get him moving in a good direction.

You mentioned he wouldn’t do counseling.  Irl several families I know, including ours, saw tremendous growth and unsticking of stuck children occur when a parent started seeing a counselor for support.  Family systems theory. 

Otherwise, hugs. Young adults are hard. 

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I don’t have any suggestions, but I will say that this age was terribly difficult for me as an autistic adult.  Good news is that I was a very different person by 25 than I was at 20/21.  This is probably true for all young adults, but it’s especially true for Autistic young adults. We just aren’t done growing and maturing, but we feel like the world expects us to start making big scary grown-up decisions. It’s hard. We shut down.  You aren’t a bad parent.  It’s just hard. 

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I had/have a similar situation with my adult daughter who is now 25. At first, I had to help her fill out job application etc. Not that she couldn’t fill them out, but she couldn’t get started. I found places for her to apply and even printed out job applications for her.


She started out with seasonal work so that she knew going into it when the job would be over. I think this helped with the anxiety over wether or not she would like the job. Also, the business hires lots of young adults for the summer, so they were used to working with “kids” who don’t have work experience, and they hire basically anyone who applies that can pass the background check, so she didn’t have to deal with rejection at first. After a few seasons with that business, she applied for a “real” job. Unfortunately, that one did not work out, and there have been ups and downs since then. Right now she does have a full time “real” job as a clerk at  gas station. She constantly complains about it, but she knows she has to work somewhere, and with the economy the way it is, there are no other jobs to be had. When I suggest that she think about what she would like to do instead of working in the store and that she should consider going back to school to get some training in something, she gets mad, so I have given up on that.

We gradually increased her own financial requirements to the point that she still lives with us, but she is now paying rent and is paying for all her daily living stuff. We even bought a used car and titled it in her name so that it is her car, and she is responsible for all of her car related expenses now. She has a small fridge in her room and buys, and fixes, most all of her own food. (We didn’t require the food thing, but most of the time she doesn’t like the food options that I provide, so she gradually started buying more of her own food).

Another thing I have helped her navigate is the social services system. She qualified and got EBT (food stamps) for a year. Before that I did not know that an adult child living with parents is considered “independent” at 23 yrsold which means that income of family members living in the same house is not considered when applying for benefits. Unfortunately, she did not qualify for unemployment due to how she lost her job. I took her to the farmers market the first time she exchanged EBT credit for the tokens to use at the market (you get double credit for using EBT at a farmers market).

Most recently, I helped her to apply for public housing. She got a letter last week that she is close to the top of the waiting list. She (and I) is very excited about the prospect of finally being able to move away from home even if it is just a few streets away in our very, very small town. Once she gets into public housing, she can stay even if her income goes down. Rent is based on incomes and there is even assistance with utilities for those who qualify.


For those who might be worried about public housing, it is very different in my small town than any place I have ever lived which is the main reason I suggested she apply. Our town is so small that there are no commercial apartment complexes at all, and decent rentals are hard to get. Also, in times when there is no one waiting for housing, they will rent to anyone who needs a place even without being low income. 

We were hopeful when she went to college that she would be successful in a “normal” life, but I have had to adjust my expectations of what a “normal” or successful life will be for her. 

oh, to help motivate her to get a job after she lost the one, she was required to do several hours of chores around the house each day while other family members were working or going to school. This really made her made which then motivated her to take the option of doing some volunteer work in exchange. She volunteered at an animal shelter in a town nearby which at least got her out of the house and around other people for a few hours each week.

I have to add an update! I just talked to my DD yesterday, and she may be ready to go back to school. She came home mad again about something at work. It just so happened that we found out yesterday by getting a refund check that her younger brother got a couple of small scholarships at his college including one just for choosing a 2 yr associates degree program. (Stupid college still doesn’t have any of it listed under his financial aid page, but that should be a different post)  I reminded her that as non-traditional and independent student she will now qualify for much more financial aid, and financial aid includes, or can include, living expenses. I would completely support her quitting her current job to go back to school full time. She thinks she can get EBT while going to school, and in our state she may even be able to collect unemployment while going to school because of her age and work history. She is finally starting to understand that if she wants a different type of job, she is going to have to be the one to make a change, and do something to make her a more desirable candidate, rather than waiting around for employers to discover her.

Edited by City Mouse
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I strongly recommend seeking assistance from your state's Dept of Rehabiltative Services.  Some states are better than others, but all of them have offered services our ds desperately needed. (First they did a complete neuropsy evaluation to qualify him for services.)  For example, he was given a counselor who shadowed him at 3 different work situations.  He was asked which of the 3 he wanted to pursue (1 was with Goodwill, the other with Publix, and I can't recall the 3rd right now.)  Ds chose Goodwill.  He was given a job coach who went to work with him the first couple of days (he didn't need her beyond that.  But, for the next 3 weeks she would pop in a couple of times a week to check on him and make sure he was feeling successful.)   For the next yr, they made monthly contact to see if he was OK.  They also offered him special drivers ed training which he refused. (All of these services are offered for free, including the neuropsy evaluation, job coach, etc.)  

He worked at Goodwill for 6 1/2 yrs in different locations (when we moved, the new locations hired him.)  We moved last summer to another state and he decided he was ready to move on to a new type of job.  (He was much more confident in himself after working successfully for so long.)  Here he works full-time for Lowes.  He was hired part-time initially and then quickly promoted to full-time. He was been recognized numerous times.  THey are teaching him to drive a forklift (my ds who refuses to learn to drive a car!) 

When we moved here we specifically looked for a job within walking distance of apartments not too far from us. He is semi-independent now.  When he was 22, he was still living at home but working at Goodwill.  I had to drive him to and from work.  But, even though the work was simply rote, it was good for his self-esteem to be out making money.  Now he pays his rent and his groceries.  I pick him up and take him to the grocery store and all of his errands.  He still refuses to make phone calls for things like drs appts, so I still ahve to manage all of those things.  But, living alone, cooking his meals, doing his own laundry, working full-time----that is HUGE progress from where we were when he was 21.  

FWIW, absolutely do not feel like a failure.  88% of Aspies are unemployed.  It is huge problem.  I would also suggest joining a parents of adult autistics group.  We haven't belonged to one in a while, but those groups will give you a perspective into the problems being faced by our adult children.

 

 

Edited by 8FillTheHeart
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Just now, DawnM said:

Thanks guys.

I am in therapy.   It is helping somewhat with this situation.

Last night he stayed up until about 1am with my husband talking and he said he does want to apply for the jobs, so, we will see.

I think that is very positive. At least he is open and communicating. 

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Wow, you all have some great information!

On 9/5/2020 at 5:39 PM, Lawyer&Mom said:

I don’t have any suggestions, but I will say that this age was terribly difficult for me as an autistic adult.  Good news is that I was a very different person by 25 than I was at 20/21.  This is probably true for all young adults, but it’s especially true for Autistic young adults. We just aren’t done growing and maturing, but we feel like the world expects us to start making big scary grown-up decisions. It’s hard. We shut down.  You aren’t a bad parent.  It’s just hard. 

I felt that way as NT person leaving for college. Thankfully it was better by the end of college. I can imagine it taking more time with the asynchronous development of ASD.

On 9/6/2020 at 3:13 PM, DawnM said:

Last night he stayed up until about 1am with my husband talking and he said he does want to apply for the jobs, so, we will see.

Does he tend to initially respond with a strong NO, but then come around? We have that dynamic here, and not always just with the ASD kiddo. It's tough to navigate, but if it's a thing with him, your counselor might have some suggestions. 

On 9/5/2020 at 12:46 PM, DawnM said:

He won't help with things without whining about how it isn't done the right way anyway, blah blah blah.

Is this a problem or a pet peeve--as in, does this keep him from doing the job, or does it just drive you up.the.wall? I assume it would be a big negative on a job site, so it's a behavior worth trying to eliminate. I am wondering if there is a sort of ABA-ish way to help extinguish this behavior. I know it wouldn't be explicitly ABA like with a young child, but I bet something could apply in principle and be effective. 

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12 minutes ago, kbutton said:

 

Is this a problem or a pet peeve--as in, does this keep him from doing the job, or does it just drive you up.the.wall? I assume it would be a big negative on a job site, so it's a behavior worth trying to eliminate. I am wondering if there is a sort of ABA-ish way to help extinguish this behavior. I know it wouldn't be explicitly ABA like with a young child, but I bet something could apply in principle and be effective. 

This working is why the DRS is good.  If gets placement with a company that they work with, they will help him develop his "employee skills."  Working for Goodwill was severely below our ds's mental abilities, but it trained him how to be an employee.  Major "mess ups" that would have led to being let go at other companies were teachable moments instead.  I talked to him about this a while ago in terms of his job at Lowes.  He said he could not have walked into Lowes and do the job he currently is doing. 

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4 minutes ago, 8FillTheHeart said:

This working is why the DRS is good.  If gets placement with a company that they work with, they will help him develop his "employee skills."  Working for Goodwill was severely below our ds's mental abilities, but it trained him how to be an employee.  Major "mess ups" that would have led to being let go at other companies were teachable moments instead.  I talked to him about this a while ago in terms of his job at Lowes.  He said he could not have walked into Lowes and do the job he currently is doing. 

I am glad he got the support he needed. I have three levels of experience with this kind of support--my SIL was a special educator and used to be a job coach (a good one), but mostly for people with very low IQs, not autism alone; my aunt gets support at work for her MS--specialized wheelchair, etc; and then a friend's daughter gets job coaching, and she does have autism. Unfortunately, they don't give her enough support long enough to work through poor work habits, so I wasn't sure if they would even touch things like grumbling on the job. It's good to know they can and should. 

 

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48 minutes ago, kbutton said:

Wow, you all have some great information!

I felt that way as NT person leaving for college. Thankfully it was better by the end of college. I can imagine it taking more time with the asynchronous development of ASD.

Does he tend to initially respond with a strong NO, but then come around? We have that dynamic here, and not always just with the ASD kiddo. It's tough to navigate, but if it's a thing with him, your counselor might have some suggestions. 

No, there is no rhyme or reason as to why he flip flops.

48 minutes ago, kbutton said:

Is this a problem or a pet peeve--as in, does this keep him from doing the job, or does it just drive you up.the.wall? I assume it would be a big negative on a job site, so it's a behavior worth trying to eliminate. I am wondering if there is a sort of ABA-ish way to help extinguish this behavior. I know it wouldn't be explicitly ABA like with a young child, but I bet something could apply in principle and be effective. 

It can be either, again, no rhyme or reason, just mood.

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15 minutes ago, DawnM said:

No, there is no rhyme or reason as to why he flip flops.

Jobs are a funny thing. There's sort of the theory of what you ought to be able to do and the reality. So flip flopping between those two makes sense in a way. And there's sort of inertia, initiation, anxiety, stress and all that too. Like me, I joke I would either get a phd (so I could get paid a living wage to do something I could do) or work chick fil a. There's not really in inbetween. I'm probably not particularly employable.

So fwiw, I've seen outcomes where the person isn't really trying to work for a living wage as the goal but is pursuing something they can give some passion to. That seems to work out. Like apple store for a computer interested person, personal trainer for weights enthusiast, that kind of thing. Also it seems to work out well for people to work low stress jobs that, again, aren't necessarily shooting for a living wage. So if I worked chick fil a, that would be the idea there. Or Target. Or you see programs for agriculture with spectrum.

If living wage doesn't have to be part of the equation, it makes the job thing more flexible. 

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2 hours ago, PeterPan said:

Jobs are a funny thing. There's sort of the theory of what you ought to be able to do and the reality. So flip flopping between those two makes sense in a way. And there's sort of inertia, initiation, anxiety, stress and all that too. Like me, I joke I would either get a phd (so I could get paid a living wage to do something I could do) or work chick fil a. There's not really in inbetween. I'm probably not particularly employable.

So fwiw, I've seen outcomes where the person isn't really trying to work for a living wage as the goal but is pursuing something they can give some passion to. That seems to work out. Like apple store for a computer interested person, personal trainer for weights enthusiast, that kind of thing. Also it seems to work out well for people to work low stress jobs that, again, aren't necessarily shooting for a living wage. So if I worked chick fil a, that would be the idea there. Or Target. Or you see programs for agriculture with spectrum.

If living wage doesn't have to be part of the equation, it makes the job thing more flexible. 

This is interesting to me. How, other than a vast trust fund or SSI, does one not need a living wage? I'm not being snarky, I promise, this is something I've been thinking about in reference to younger dd.

I can see a few years of low income in young adulthood as being manageable. We could provide longer-term support than ordinarily parents expect to provide. But for the longer term, poverty is grinding misery. Yet I don't think SSI is in the cards.

Maybe this ought to be a spin-off thread; I don't want to hijack. But maybe this is relevant to Dawn also.

In our case, dd finds working with people to be a disincentive. It's just way too stressful. But she doesn't want to be in charge of things herself either. She wants a simple job, where she has others to advise and make the big decisions, but paradoxically, no other people to deal with. She doesn't want stress. It's hard to see what fits those criteria that will provide a living wage.

Oh, and she strongly resists talking about any of this. That's stressful too. This information about what she wants is from an online career survey I convinced her to do a while back. She's not quite 16, so some of this may change. She's matured a lot in recent years. But right now it worries me a lot.

Anyway, @DawnM, I read threads like this and think that's us in a few years.  The refusal to accept things which might help, the (probably anxiety based) anger at suggestions or talking about it... That's all so consistent with what I see here. I can imagine a bit of how hard it is. Hugs.

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30 minutes ago, Innisfree said:

How, other than a vast trust fund or SSI, does one not need a living wage?

Isn't that the question everyone with a parent with a disability thinks about? 

https://www.socialthinking.com/Articles?name=social-thinking-social-communication-profile  MGW's profiles suggest whether the dc is likely to live independently, independently with assistance, or what the outcome is likelyl to be. By about age 8 the profile is pretty fixed, so it's not like it's an unknown thing. The social worker, behaviorist, etc. can already *predict* what the family should be working toward. 

My dh thinks I'm pretty grim, and I am just working with the data in front of me. Based on my ds' profile, he's likely to be able to "live independently with assistance." Also, the stats are for under-employment in ASD irrespective of IQ. This fits what I see of my ds, that his need for breaks to maintain regulation is high, that he's not likely to be able to work a 40 hour/week job. 

So when I talk with professionals about my ds, I suggest to them I am working toward a mixture of work and hobby, hopefully 20-30 hours of "work" that earns wage and time/money then to put toward his leisure/hobby. And I want to encourage a hobby so he's not reverting to gaming and behaviors that are not helping he be connected. He's socially motivated and appreciates connections, even though he struggles to maintain them. 

So far no one has pushed back on that assessment. They tell me yes, that sounds reasonable. We talk about how we prioritize to get there. What school work is important, how we get there. And it's not like some cap, but just we understand where this is likely to end up. And that's a best outcome, if by some miracle it all comes together and he doesn't go through a phase like Dawn is describing. I would not be shocked if he goes through a phase like that too.

So for the financing, yeah there are more issues involved and lots for a family to think through. That's with your lawyer, estate planning, etc. We have (honestly the name slips my mind at the moment) accounts, and many states have them. The money does *not* count against medicaid, etc. so it allows your person to work, have some money, or even for you to deposit money. The money can be used for their care, so for rent for their independent living, weekly housekeeping, whatever they need. My thinking was that we would have that account and also an account he can spend from freely. His wages would contribute to his care but not be *all* his care. 

I think we just have to see how it pans out, but that's what I anticipate, some kind of guidance, structure, allowing him to be as independent as he can be and giving him a LOT OF STRUCTURE.

STABLE. They're called STABLE accounts here. Different states handle the differently. But yes, there needs to be that planning step and there are financial consultants who specialize in it. STABLE accounts have a few oddities and have issues with transferance across state lines, so you want to check carefully before starting that. The big issue there is *encouraging work* while keeping the person medicaid eligible.

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So truth be told, we're probably more like DawnM, where it's not a *problem* to keep ds. It's just that there's value in work. 

At least for now, what we're doing is having him work. Dh will have him water plants, pull weeds, use a weed whacker. When ds started, he was flustered after a short time and needed long breaks. We tried too much and he would come back totally frazzled, needing higher anxiety meds just to function. Now he can go work 1-2 hours at something and be ok. 

None of that is a living wage, but there's a lot of value in work. 

My dd is 21 and she came back with us for a while trying to sort out her plans. I got really frustrated, because my gut was that, for her, for where she functions, for her age, she needed to either be doing school full time or WORK. And it's not so much about the money but about what work does for a person. I just felt like I was not willing to continue to feed her if she didn't work to contribute. 

So I think even when you *can* afford to float someone, there's sort of your gut sense of their dignity and what is right and how to handle it. 

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49 minutes ago, Innisfree said:

It's hard to see what fits those criteria that will provide a living wage.

Ok, so I'm reading this further and she's 16. What is your plan if she *can't* work a living wage job or needs to be somewhat under employed to be mentally stable? 

I guess I don't know how you get around grappling with it if it is what it is. There's low income housing or sharing a place with someone. There's staying with parents/relatives but having a different arrangement and contributing rent. 

Our county board of disabililities changes you to a transition/job coordinator at 14. I think that's the person we'll be sorting it out with. I assume that's a way to find out more resources, like shared housing, communities, etc. 

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5 hours ago, PeterPan said:

So truth be told, we're probably more like DawnM, where it's not a *problem* to keep ds. It's just that there's value in work. 

At least for now, what we're doing is having him work. Dh will have him water plants, pull weeds, use a weed whacker. When ds started, he was flustered after a short time and needed long breaks. We tried too much and he would come back totally frazzled, needing higher anxiety meds just to function. Now he can go work 1-2 hours at something and be ok. 

None of that is a living wage, but there's a lot of value in work. 

My dd is 21 and she came back with us for a while trying to sort out her plans. I got really frustrated, because my gut was that, for her, for where she functions, for her age, she needed to either be doing school full time or WORK. And it's not so much about the money but about what work does for a person. I just felt like I was not willing to continue to feed her if she didn't work to contribute. 

So I think even when you *can* afford to float someone, there's sort of your gut sense of their dignity and what is right and how to handle it. 

 

We are doing this too.   He watches our 2 year old for 2 hours every morning, provides "preschool" of sorts, no electronics, only games, learning, etc....and we pay him.   It is enough to cover his students loan plus a little extra.  

But I don't know if he will ever make a living wage.   Maybe Voc Rahab can help with some of that.

I imagine he will be with us a while longer, maybe indefinitely.   We are fine with that, but worry about when we are older.   

And honestly, we could get him a small condo or something, but I worry he won't remember to pay the bills or taxes, etc.....he definitely isn't ready for that yet.

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9 hours ago, PeterPan said:

Jobs are a funny thing. There's sort of the theory of what you ought to be able to do and the reality. So flip flopping between those two makes sense in a way. And there's sort of inertia, initiation, anxiety, stress and all that too. Like me, I joke I would either get a phd (so I could get paid a living wage to do something I could do) or work chick fil a. There's not really in inbetween. I'm probably not particularly employable.

So fwiw, I've seen outcomes where the person isn't really trying to work for a living wage as the goal but is pursuing something they can give some passion to. That seems to work out. Like apple store for a computer interested person, personal trainer for weights enthusiast, that kind of thing. Also it seems to work out well for people to work low stress jobs that, again, aren't necessarily shooting for a living wage. So if I worked chick fil a, that would be the idea there. Or Target. Or you see programs for agriculture with spectrum.

If living wage doesn't have to be part of the equation, it makes the job thing more flexible. 

In terms of pursuing something they can give passion to, fIrst it requires that their passion equally leads to a job that provides a living wage.  Computer gaming and playing Magic don't lead to high paying jobs.  Neither does drawing manga or most art.  Second, for most high paying jobs, it also requires them to be able to complete degree/certificiation programs and be able to cope with the stress/anxiety that often comes with upper level employment---often constantly switching gears, meeting multiple expectations simultaneously, and self-direction accomplishing goals at a non-methodical pace.

In terms of working for a living wage, I think it needs to be approached as requiring stages of progression.  It can take accepting the fact that they have to work "beneath" them for their initial employment and learn how to be an employee. I agree that working for Goodwill did not offer ds a living wage.  I disagree that it means that they can't progress beyond that.  Lowes, for example, has been great for ds.  He is paid a decent amt, full benefits (with a matching 401K),  and they're willing to train him.  That means he is promotable from within. Will he make as much his college-degreed siblings? No.  But, he certainly makes enough to live well as a single man.

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12 minutes ago, DawnM said:

 

We are doing this too.   He watches our 2 year old for 2 hours every morning, provides "preschool" of sorts, no electronics, only games, learning, etc....and we pay him.   It is enough to cover his students loan plus a little extra.  

But I don't know if he will ever make a living wage.   Maybe Voc Rahab can help with some of that.

I imagine he will be with us a while longer, maybe indefinitely.   We are fine with that, but worry about when we are older.   

And honestly, we could get him a small condo or something, but I worry he won't remember to pay the bills or taxes, etc.....he definitely isn't ready for that yet.

Dawn, I can totally relate to your post.  We lived there.  I will say that it can take tiny baby steps to help them function more and more independently.  One baby step at a time.  Ds does now live on his own in an apt where he can walk to work.  He manages his own schedule (huge.....he gets to work on time independently.)  He cooks his own meals (albeit not very healthy ones.)  He does his own laundry.  I manage his $$ for him. I take him grocery shoppting. (paid for with his $$.)  I pay all of his bills (with his $$).  We give him spending $$ vs. letting him have straight access to his account (he does NOT know how to budget or control spontaneous purchases.)  At this point, he has a significant amt of $$ in savings (he could buy a car if wanted to learn how to drive), a 401K started, and an IRA acct.  

I used to despair he would never be able to function to this degree.  His siblings all know that he will never be 100% independent.  They all know that they will have to assist him to some degree after we can't help him anymore.  But, I no longer despair that he won't be able to live in his own space or that he will be destitute (he is a great employee who works hard.  Hard workers are valued.)

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One job he is looking at requires a resume.   Not sure why, but we need to update his resume and then he will apply this weekend.   However, he doesn't drive and it is a little further than the other job, so that will be a little bit of a challenge to get him back and forth.    There are NO busses in our county.    We had thought of moving to the city, where there are busses, but we didn't want our 16 year old to have to change schools.   

And ASD child had a bad experience on the bus once and has refused to ride it since.   We may get past that at some point, but it isn't relevant now, so it doesn't matter.  

And our area is 2 lane roads with lots of curves and such, so riding a bike or moped on them just scares me for him, there have been bicyclists who have been killed on our roads.

He wants a job working from home.   He has had freelance jobs working from home in the past but they are few and far between.

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Dawn, we have never lived where there is traditional bus service.  But, if you contact DRS, you might find that there is rural disability bussing.  We have never been able to use the disability bussing easily bc their times can be quirky and it has just been easier for me to drive him wherever he needs to go.  When we moved here last summer, finding a place where he could work and walk from an apt was a goal.  It has been a huge blessing.

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7 hours ago, Innisfree said:

This is interesting to me. How, other than a vast trust fund or SSI, does one not need a living wage? I'm not being snarky, I promise, this is something I've been thinking about in reference to younger dd.

 

1 hour ago, 8FillTheHeart said:

 

In terms of working for a living wage, I think it needs to be approached as requiring stages of progression.  It can take accepting the fact that they have to work "beneath" them for their initial employment and learn how to be an employee. I agree that working for Goodwill did not offer ds a living wage.  I disagree that it means that they can't progress beyond that.  Lowes, for example, has been great for ds.  He is paid a decent amt, full benefits (with a matching 401K),  and they're willing to train him.  That means he is promotable from within. Will he make as much his college-degreed siblings? No.  But, he certainly makes enough to live well as a single man.

I've been following this thread with interest, since it correlates a lot with what we've been going through with DS21. In summary--he graduated from college in December with a major in political science and a minor in criminal justice. So he can check the box for college degree but isn't really qualified for any particular career. We told him to take a month off over the holidays and then start actively looking for a job. He's on the spectrum, is highly to profoundly gifted in some areas. Anger, opposition and defiance have never been problems for or with him. Anxiety is by far his major roadblock He's medicated for it, but it's still a problem. His is mostly the freezing kind of anxiety that leads to inertia as being the safest choice. Deer in the headlights stuff. 

He had a couple of interviews for paralegal jobs, which is something he's fairly interested in. But they came to nothing, and then the pandemic hit and we got really picky about what he applied for because DH is super high risk and we didn't want a lot of increased exposure. But he still applied for many, many jobs during that time, almost all of them ones that either DH or I found by searching Indeed and other job sites (see prior comment about anxiety/inertia).

Three weeks ago DS took a job at a local grocery store. We decided after eight months of nothing on his resume, and the damage sitting at home was (probably) doing to his mental health he needed to be doing something/anything. DH and I had to push pretty hard to get him to apply. Working part time in a grocery store isn't his idea of fun, and definitely it's an under-employment thing for him (and see prior comment about anxiety/inertia).

Not surprisingly, he HAS had a bit of anxiety related issues, mainly about his manager and how his manager talks to him. But thankfully we've been able to walk him through it, and three weeks in he seems to be doing okay and actually kind of enjoying it (fingers crossed that continues).

Is it a living wage? No. Even full time at what he's being paid now it wouldn't be a living wage. But if he became a full time employee and if he got a couple of raises (I think the raises at least are very likely to happen even if he stays part time) and if he continued to live in our (paid off) house after we're deceased then he could definitely get by okay. But right now we're approaching this job as @8FillTheHeart describes -- a stage of progression to (hopefully) something eventually more fitting with his abilities, and something that pays better. With his anxiety I don't think there's any way he could have handled a higher stress job right away. But gradually working up to it -- Maybe. Probably.

I don't know if any of this helps, @DawnM, but I wanted to chime in as another voice that lets you know you're not alone. 

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1 hour ago, 8FillTheHeart said:

Dawn, we have never lived where there is traditional bus service.  But, if you contact DRS, you might find that there is rural disability bussing.  We have never been able to use the disability bussing easily bc their times can be quirky and it has just been easier for me to drive him wherever he needs to go.  When we moved here last summer, finding a place where he could work and walk from an apt was a goal.  It has been a huge blessing.

 

Maybe.  I haven't looked into any of it, but for now, we can work things out.   My husband works from home most days and it is flexible which days.   And he is home for Covid full time right now and realizing that maybe going into the office 2 days a week is unnecessary, even in the future.

The grocery store he applied to isn't even opened yet, but is only about a mile or so up the road, so taht would be the most convenient.   Well, working at home is the most convenient, but you know what I mean.

 

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9 minutes ago, DawnM said:

 

Maybe.  I haven't looked into any of it, but for now, we can work things out.   My husband works from home most days and it is flexible which days.   And he is home for Covid full time right now and realizing that maybe going into the office 2 days a week is unnecessary, even in the future.

The grocery store he applied to isn't even opened yet, but is only about a mile or so up the road, so taht would be the most convenient.   Well, working at home is the most convenient, but you know what I mean.

 

I would personally push against working at home.  Learning to work in a job with other people is an essential skill unless he is going to be able to maintain working from home indefinitely.

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3 hours ago, DawnM said:

And honestly, we could get him a small condo or something, but I worry he won't remember to pay the bills or taxes, etc.....he definitely isn't ready for that yet.

Our state needs to have I forget what it's called, facilitated guardianship? There's sort of a middle ground legally, where the guardian is only consultative. The person IS legally independent. They just have *access* to the guardian to help sort things out. There are a few states that have them.

I guess I was hoping that when he begins working for pay we could set him up with structures. So the paycheck divides out, with part depositing to the STABLE account to pay bills and part depositing to a personal/leisure account where he can do whatever he wants. That way it's very clear.

2 hours ago, 8FillTheHeart said:

Lowes, for example, has been great for ds.

This is the kind of work MGW says to look for. She says (and I suspect it's the case part of the time) that the hang up is usually the PARENTS, not the kid. The kid can have a degree but be relieved to work a job where he leaves the stress behind. 

2 hours ago, 8FillTheHeart said:

he is a great employee who works hard.  Hard workers are valued.

I LOVE this. I think it's the picture we need to have for our kids, where they wake up every day with something they know they can do and get the dignity and sense of belonging of work. I love hearing how well your ds is doing. 

 

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The idea of under-employment has always been a bit of a mystery to me. I mean -- who decides what is or isn't under-employment? Is it strictly IQ? That seems very weird, given how wonderfully complex and varied people are. I know/have known quite a lot of people who would, I suppose, probably fit the definition of under-employed, but they've all seemed mostly content and happy with the lives they're leading. So how is that automatically a bad thing? Back in the day I was a legal assistant/paralegal. Quite a few of the attorneys urged me to go to law school. But the idea of that much more school wasn't appealing to me at all, nor was having to worry about getting in XXX number of billable hours a week to be on the partner track, having to bring in business for a firm, etc. I didn't want that stress. So I guess I would have fit the definition of under-employed? Whatever.

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1 hour ago, 8FillTheHeart said:

I would personally push against working at home.  Learning to work in a job with other people is an essential skill unless he is going to be able to maintain working from home indefinitely.

 

That sounds reasonable, but we have been trying for 22 years and it hasn't worked really well yet.   8 years of group and individual therapy, two years of living away at college, we aren't there yet.

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33 minutes ago, Pawz4me said:

under-employment

I think it's mainly meaning amount of time they can work. Full time, part time, hardly any time. So even working at a job that fits the level of stress, etc. they can tolerate, they might still find it difficult to work full time. I don't think someone with a disability who is working full time is considered under employed. But being unable to find work you can tolerate or unable to handle a full time placement at your combination of jobs would lead you to be considered under employed. 

So under employed is a step between unemployed and employed. You're wanting to work more, needing to work more, and can't for whatever reason. (disability, lack of availability, whatever) They talk about it with the general population too, so it's not a disability thing. It's definitely not a sneeches, not the job I wanted thing.

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1 minute ago, DawnM said:

 

That sounds reasonable, but we have been trying for 22 years and it hasn't worked really well yet.   8 years of group and individual therapy, two years of living away at college, we aren't there yet.

There are so many skills involved in employability. This is the form we learned about at OCALI last year. https://www.ocali.org/project/tg_aata/page/elsa_documents  So while it's a goal to get them out working, it's also something requiring them to have support to fill in those missing skills. In the big city near us they have transition programs that focus on those missing employability skills. I think it's also what 8 was getting at in so many words, that if you want the skills to be there you have to keep working on them. And I can see and it totally makes sense where those stepping stones in jobs would build those skills. Her ds wasn't READY to go into the nice Lowes job with benefits and a 401 k at first. He had to learn those skills. I think that's what she was getting at.

What I find too, and I think this is where she was going, is that if you don't get out there and (learn the skills, make friends, whatever), life seems to sort of pass you by. Your peers find other friends, you don't keep acquiring skills to keep up with your friends who are growing in their skills. So that too can be a good argument for trying to be out there.

But I'm totally, totally with you on why it's hard. I'm just sitting here at 44 with these realizations that if you don't keep acquiring skills it can leave you in an odd place. 

I think you'll sort it out. We let our dd go and cut some of the strings, because we realized she wasn't going to make that leap while in our house. 

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52 minutes ago, DawnM said:

 

That sounds reasonable, but we have been trying for 22 years and it hasn't worked really well yet.   8 years of group and individual therapy, two years of living away at college, we aren't there yet.

This is why I would seek support from DRS. This isnt about therapy. This is about working with people who are trained in helping them develop employability skills. The objectives are different. 

I'm just going to be honest that it was hard for me to constantly take ds to DRS. It is a much different place than the world we live in. But, those are the professionals who knew how to help him learn the skills he needed to be an employee.  They work with businesses who are willing to train people with disabilities.

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1 hour ago, 8FillTheHeart said:

This is why I would seek support from DRS. This isnt about therapy. This is about working with people who are trained in helping them develop employability skills. The objectives are different. 

I'm just going to be honest that it was hard for me to constantly take ds to DRS. It is a much different place than the world we live in. But, those are the professionals who knew how to help him learn the skills he needed to be an employee.  They work with businesses who are willing to train people with disabilities.

 

DRS?  

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23 hours ago, 8FillTheHeart said:

Department of Rehabilitative Services in most states we have lived in. I googled and in CA it is the DOR. Here is a link to CA's job seekers page: https://www.dor.ca.gov/Home/JobSeekerConsumer

It's Opportunities for Ohioans with Disabilities (OOD) in Ohio, which is very non-intuitive. Just chiming in if someone listening in needs that detail.
*ETA: searching for "vocational rehab" is likely to get results for most states.

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2 minutes ago, DawnM said:

Thank you, I have looked at that.   We just haven't gone in yet.   The office nearest to us is not that close, but I do need to see if they are now open.

In one state where we lived, we did not have an office in our county. THey actually sent someone out to meet us vs our having to travel there. (Keep in mind that they are used to working with low income families, so transportation from a rural area could be an issue and they want to ensure that they meet the needs of all people qualified for services.  I don't know about NC, but it is only a phone call.  For us, I called and they arranged to meet at a local library within 3 wks.)

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DS16 is in a vocational rehabilitation program for at-risk teens (at-risk for employment issues), and we also had our initial meeting with his counselor at our local library. We've never been to her office; she calls us and sends us information via email, mostly, but she does meet with DS16 at school at least once a year. She is the person who connects him with the job skills program opportunities -- tells us what the programs are and gets him on the waiting list, and sends us the reports about his progress, etc.

Those programs are what happens in person, and they are run by different organizations that work with people who need job training. GoodWill, for example. The one that DS is connected to is called Alpha. The Alpha employees serve as job coaches who teach job skills, accompany the students on job sites, etc. So we have had to take him to his Alpha classes (they were held on Zoom this summer), and when he has an actual job next summer, we will have to take him to his job site, and the Alpha coach will meet him there. He can get transportation through this state program, but we haven't done that yet; I have always driven him. I thought it would be good for him to use the transportation service this summer, just to get used to the experience, but with Zoom that became a moot issue.

DS also gets county disability funding and could potentially use it to hire a driver. We were told that it can be hard to find a driver in our area (we would have to find them ourselves; they are not provided, though the county does have a database of service providers that we can contact).

We are still in early days of dealing with employment and transportation issues, so I'm listening in to the advice of others with interest. I think a lot about how to prepare DS for the future. It's tricky, because DS will only consider being a professional musician (heavy metal rock star 🙄) and is unwilling to work toward other options we suggest. At this point, I am hoping that he will be able to find work some place where he can move boxes around -- UPS, Costco, etc -- because I think he could do it and have steady employment. But he doesn't like to work and is not a hard worker, and he doesn't have the attention to detail needed for something like stocking individual items, which is why I'm thinking more on the line of warehouse work and boxes. But my ideas are always rejected by him, so I haven't proposed that to him yet. I'm hoping we can steer him toward working at the food bank for his vocational rehab job next summer. It's one of the options, and he liked it when he visited, but he refused that choice for this summer. He is difficult to work with, in that way.

We are operating under the idea that DS will not be able to afford to live alone financially, so we think a lot about what we might need to do to help him. Still working on figuring a lot of things out, and I'm sure that will be the case for a long time to come. We did set up a STABLE account for him.

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23 minutes ago, Storygirl said:

some place where he can move boxes around -- UPS, Costco, etc

Total aside, but I hear amazon is a really *rough* place to work. Long hours, repetitive motion injuries, etc. Now it was just one person telling me this, but still. But the people I know (one with NVLD btw) who work UPS like it a LOT and have stuck with it as a career. So your logic totally makes sense. Just be really cautious on amazon if it ever crosses your mind. The pay is crazy high, but getting injured would be a mess.

25 minutes ago, Storygirl said:

DS will only consider

Yeah, that's going to be rough. My ds started asking me when he was young what his work would be when he grew up. I now tell him people sometimes do *2* things. Planting seeds for this issue I guess.

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13 minutes ago, PeterPan said:

Total aside, but I hear amazon is a really *rough* place to work. Long hours, repetitive motion injuries, etc. Now it was just one person telling me this, but still. But the people I know (one with NVLD btw) who work UPS like it a LOT and have stuck with it as a career. So your logic totally makes sense. Just be really cautious on amazon if it ever crosses your mind. The pay is crazy high, but getting injured would be a mess.

Having worked in an Amazon warehouse....it's not as rough as some people make it.  Sure, mandatory overtime can be long, especially during Christmas, but I didn't find it any longer than mandatory ot in other situations.  Also though.....Amazon manages employee hours in real time.  Even though my shift was technically 12 hrs, 5 days a week, with the mandatory OT, it was actually much more common for my weekly hours to land somewhere around 45 hours.

I don't know how anyone could get repetitive motion injuries.  I was at a different station every single night...and often, 2 or 3 stations in one night.  I was a "packer." which is pretty much what it sounds like, I would pack up the stuff into the shipping boxes.  Their system is set up so that it manages what items are packed into what sized boxes and the different stations are set up according to the sizing/shape of the boxes that station should be using.  (ftr, the system doesn't always set it up to use the smallest box available, I don't know if that's a problem with the system, or if there's some sort of efficiency of time factor involved with that.)  Gift wrap was always my favorite station lol.

Now, it IS a physically demanding job.  Warehouse floors are all concrete and all stations are standing stations.  Many times, especially at the larger stations of course, the items being packed up are heavy and/or large.  And yes, breaks and time cards are strictly managed, but we never had any trackers that we had to wear or anything.  Of course, I was there 7 yrs ago, things might have changed some.  Also, I think it should go without saying that obviously, different warehouses are going to have differences in how jobs get done and how things are managed.

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16 minutes ago, PeterPan said:

Total aside, but I hear amazon is a really *rough* place to work. Long hours, repetitive motion injuries, etc. Now it was just one person telling me this, but still. But the people I know (one with NVLD btw) who work UPS like it a LOT and have stuck with it as a career. So your logic totally makes sense. Just be really cautious on amazon if it ever crosses your mind. The pay is crazy high, but getting injured would be a mess.

Yeah, that's going to be rough. My ds started asking me when he was young what his work would be when he grew up. I now tell him people sometimes do *2* things. Planting seeds for this issue I guess.

Yes, I've heard that about Amazon, as well. My cousin's husband worked as a UPS driver for 30 years. DS would not be able to work as a driver (unless things change), but since someone in my family made a career at UPS, I do think of it as a possible option. I don't know; we will see. I think the local warehouse is pretty much on the opposite side of the city from us, which makes transportation to and from work a possible issue. At this point, I predict DS living with us well into adulthood. Though he will need to work on being more pleasant to live with. I do dream of having a house with a built-in apartment, so that he can live with us but not WITH us all of the time.

DS is a sophomore. I anticipate that when he graduates, we will need to have an agreement that he has to work. Perhaps he will only be able to manage part-time (too soon to tell). But he would definitely be content to just hang around the house, playing his instruments all day, if we would allow that. I like the idea of him playing in a local band, but that won't pay his bills. He does sabotage himself even when thinking of his own goals, though. For example, he refused to join a teen band when asked, because all of the other kids were one year younger than he is. We couldn't talk him into changing his mind on that one. And he refuses to do related things like learning to run sound equipment. Sigh.

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1 minute ago, happysmileylady said:

Having worked in an Amazon warehouse....it's not as rough as some people make it.  Sure, mandatory overtime can be long, especially during Christmas, but I didn't find it any longer than mandatory ot in other situations.  Also though.....Amazon manages employee hours in real time.  Even though my shift was technically 12 hrs, 5 days a week, with the mandatory OT, it was actually much more common for my weekly hours to land somewhere around 45 hours.

I don't know how anyone could get repetitive motion injuries.  I was at a different station every single night...and often, 2 or 3 stations in one night.  I was a "packer." which is pretty much what it sounds like, I would pack up the stuff into the shipping boxes.  Their system is set up so that it manages what items are packed into what sized boxes and the different stations are set up according to the sizing/shape of the boxes that station should be using.  (ftr, the system doesn't always set it up to use the smallest box available, I don't know if that's a problem with the system, or if there's some sort of efficiency of time factor involved with that.)  Gift wrap was always my favorite station lol.

Now, it IS a physically demanding job.  Warehouse floors are all concrete and all stations are standing stations.  Many times, especially at the larger stations of course, the items being packed up are heavy and/or large.  And yes, breaks and time cards are strictly managed, but we never had any trackers that we had to wear or anything.  Of course, I was there 7 yrs ago, things might have changed some.  Also, I think it should go without saying that obviously, different warehouses are going to have differences in how jobs get done and how things are managed.

I've heard that there are a lot of productivity quotas. DS would definitely not be able to keep up.

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3 minutes ago, Storygirl said:

At this point, I predict DS living with us well into adulthood. Though he will need to work on being more pleasant to live with. I do dream of having a house with a built-in apartment, so that he can live with us but not WITH us all of the time.

I wish our state had that limited guardianship. I don't remember what it was called, but this is the article I read on it. https://www.pressherald.com/2019/09/01/hes-42-autistic-and-finally-independent/ It's got a paywall up now, but I know I read it when I first found the article. Hopefully you can see it.

Fwiw, that seems like a rough path if he stays with you. His personality isn't likely to change. 

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4 minutes ago, Storygirl said:

I've heard that there are a lot of productivity quotas. DS would definitely not be able to keep up.

I had no such quotas.  I also never knew of anyone who was let go for "productivity."  The only people I knew of that were let go before the temporary employment period was up (I was hired as a seasonal employee) were those who simply......................didn't come into work.  Most often................because they didn't want to.  The bar is set really low to be employed in an Amazon warehouse (at least for those seasonal positions for sure.)  And that low bar is reflected in the quality of employee.

 I have heard there are quotas also, so it's possible that's something that's different from 7 yrs ago.

 

One thing that was completely bizarre.....when the temp period was up, I could have been hired on full time.  But, I couldn't find my high school diploma.  I brought my college degree in, and the lady in the local HR office said that would be fine.  I mean, last I checked, you can't get into college without a HS diploma or a GED, right?  Well, for corporate HR, that wasn't good enough.  That is literally the only time in my life I have ever been asked to present my HS diploma.  And I had worked the entire seasonal period without having to present it.....because they just needed bodies on the floor taping boxes shut.  

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