Family/social-services question - looking for guidance

We're struggling with a situation regarding my step-son, so naturally I turn to this great group for advice. I'll try to highlight the details to keep this short, then answer any questions as they come up. I love the kid, and we fortunately do not have any of the step-parent/step-child anger or resentment that so many families deal with, but his mother and I are really concerned that he's not going to be able to care for himself as an adult. . He was labeled with learning disabilities in elementary school and given an IEP to allow him to get extra assistance with tests and homework - but by junior-high he refused to use it. He barely made it through school, but did get his high-school diploma.

He's now 21, and has been so far unable to get his basic welding certificate at junior college - he does ok at welding, but cannot pass the tests

Over the past year I've become aware that there's a condition considered "Mild Autism" which seems like it might describe him:

1.) He doesn't like people - unless they're people he knows. I've tried to get him past this by having him run our antique/junk store during, and it's helped somewhat. However it's very rare for him to ever leave the house on his own free will. He will often say things to people that most would consider rude, but when we try to explain it to him afterward he cannot understand how/why I what he said/did would be construed that way.

2.) His interests are pretty limited. He likes movies, TV and books. He's follows celebrity news/drama/tragedy closely, and plays some online and/or console games, but he's definitely not a "gamer". That's it.

3.) He's borderline paranoid about some things. For example, he can't stand for the door to be left unlocked...even just for 30-seconds, while someone is standing right outside it. I discovered he had $1800 cash in his room he'd saved up from gifts/allowance/odd-jobs over the years, and made him open a bank account. He completely freaked out that he'd lose all his money & that someone would rob the bank and steal it. He never could grasp the concept that it was safer in the bank than his bedroom.

4.) His comprehension and communication skills are very lacking. Although he reads books(fiction) constantly, he doesn't really grasp what he reads, nor does he grasp what others tell him. He also speaks equally as poorly.

5.) He struggles with cognitive skills. He's not really capable of reading instructions to complete tasks, or figuring things out on his own. Just last night I asked him to check the oil on the car. He came back a few minutes with a bottle of transmission fluid and asked "is this it". I asked him what it said & he replied "I don't know?", so I asked him to read it & he agreed it was the wrong bottle. A few minutes later he came back with the oil bottle asking if it was right...keep in mind both these bottles were in the trunk of the car, so he wasn't sifting through multiple bottles/types of oil. At least he asked first though!

6.) His personal hygiene suffers. He doesn't really care if he has BO, if his shirt is stained or has holes, or if he's still wearing lunch on his face, beard, clothes, etc. He also doesn't grasp why he needs to clean his room, or why mice/bugs in the house are really bad.

7.) He's lazy, but at least he's the first to admit it. Honestly, I'm not upset if he doesn't have dreams & goals. He's content and doesn't cause trouble.

His younger sister, who's a junior in HS, accepted several years ago that she'd likely be caring for him once we're gone. That's not fair to either of them though.

We'd love for him to be able to have an independent life, but he doesn't really want one. We're not sure if his conditions are bad enough to qualify him for social services, and when we discussed it with him he completely shut down and refused to talk. Of course we hoped/figured he'd "grow out of it", but he hasn't yet , and with each passing year we get more concerned about his future.

He refuses to go talk to a psychologist/psychiatrist, so we're at a loss for options. Any suggestions?

His issues probably are severe enough to qualify him for social services. So I'd start by contacting them, and asking their thoughts on what to do, even though he won't talk to them.

You may want to look into being named his legal guardian and declaring him incompetent so you and your wife can legally take care of his affairs since he is an adult. If he needs help with money or making decisions about medical care, etc. It may not be applicable to your situation, but may be worth looking into and deciding if it is something that may be of use.

I don't have any specifics to offer, but I will say I have a friend with an adult son in a very very similar situation. His son is employed at a modest level and does live more or less independently (in a group home, but not in my friend's house). The son mostly takes care of himself (but has the safety net of the home supervisors) and by all I can see, is a happy, contented individual.

I have nothing to offer, except you need the help of social services. Maybe they would come to him. Some of these people are very good at what they do and some are just place holders with a pad.

I have co-worker who is going to be in the same boat. I believe his son is about to graduate from high school.

Thanks for the input. For better or worse I don't have any experience dealing with this stuff.

Where would be the best place to start first? I know of a local organization that provides a variety of unrelated services(divorce/depression/addiction counseling, as well as senior services). Someplace like that, or somewhere else?

Does your state have a Department of Mental Health? I know many states starting cutting the guts out of their department about 20 years ago.

In reply to spitfirebill:

Good question, I'll have to check.

I applaud that your daughter is looking after him. That makes her a saint in my eyes.

However, for her sake, it would be a good idea to investigate any social assistance opportunities so that he does not become a financial burden.

I have a brother in a similar situation. My parents located a charity/non-profit (Boley? or some such name in FL) and they specialize in integrating marginal personalities into the community. It worked wonders in my brother's case.

I have nothing to add, except that you're a good person in dealing with this. Many people might have taken that situation as a whole and written him off.

Yeah Pete, I'd look into social services, however they will not commit to anything until he gets a psych eval, so he will have to do it.

I have a friend who's brother is just mentally handicapped enough that he can't take care of himself. He's been in a group home for 20+ years and manages well. I asked how he was doing, and he says he's his same old self, but doing well.

That may be the option for the future. He can be fairly independent, but he will have someone looking out for him.

Good luck, it sounds like a lot to deal with.

Thanks again everyone! We have no problem keeping him with us as long as we can, but someday that won't be an option. Since you never know when that day will come about, we figure it's best to be proactive.

I'll see what's available locally and post back with any more questions.

Sent this to a friend with 4 autistic kids (to varying degree's) and SWMBO as one of her many degree's was in social work/elderly services. Hopefully one or both with chime in.

In reply to Spinout007:

Thank you!

Maybe a job would give him a sense of independence.

One does not need tremendous cognitive skills to do a lot of jobs. I imagine it's a hinderence to assembly line work. You said he can weld... so he is competent enough to not kill himself with tools or fire. There are plenty of places for a weldor that don't need certifications. Look for ironworks that make railings or patio furniture. That sort of stuff.

Perhaps motivate him by waving the job as a way to pull his weight in lieu of social services. Make it an either/or? It gives him the opportunity to demonstrate his willingness to be independent. If he refuses... do what you have to.

petegossett wrote: In reply to Spinout007: Thank you!

No problem, the guy has been like a brother to me for years. When I start bitching to loudly about my life I look at his and consider myself humbled.

4 kids with various levels of autism, a disabled wife, and he busts his balls trying to keep a job while still being able to ferry all 5 of them around. He's a saint compared to myself.

ANYWHO

Quick read through before he got to work got me the text "Sounds like a case of undiagnosed Aspergers" and "Occupational Therapy usually does wonders for those with it, but with his age, it will be rough going". I'll call him later tonight and see what else I can drag out of him.

I'm not sure whether this is autism related or not - my son has what appears to be a language delay issue, and I've seen people confuse that with autism. He's currently enrolled in an "autism class" at a local school that was probably named that in an effort to get autism related funding, as he's not the only kid in the class with a condition other than autism.

It sounds as if your step-son may be self conscious about his learning disability diagnosis, whatever it is, and maybe could use a bit more self confidence. But it also sounds like he's got some sense of pride with some desire to do things on his own. To that end, I like GPS's suggestion to see if you can help him find a job. Knowing there's productive work out there he can do sounds like it may improve his self confidence and possibly help build a desire to be more independent.

The group home thing also seems like it could be a good idea.

In reply to MadScientistMatt:

I've been working on getting him a job, but that's compunded by several problems.

1.) Due to his social anxiety/issues he refuses to answer the phone if he doesn't know the caller ID and won't return calls.

2.) Because of his poor communication, comprehension, and learning/memory issues(forgot to mention he was diagnosed with memory problems at an early age) he couldn't make it through a normal interview - or even complete an application. So it either needs to be someone who knows and/or is willing to work with him - and there aren't many, since he doesn't socialize - or a place that deals with people similar to him. I'm not aware of any place like that in our area, but I previously had no idea where to start.

3.) We're rural, and while he drives, he's unable to go anywhere far/new because he doesn't deal with directions & can't really operate a GPS. So that's another issue.

I've been talking to local farmers I know just trying to get him some type of basic manual labor. Anything to help him get experience and hopefully confidence.

petegossett wrote: I've been talking to local farmers I know just trying to get him some type of basic manual labor. Anything to help him get experience and hopefully confidence.

That sounds like a good place to look. They might even give him a good chance to use his welding skills.

Hey, these are the people I work with every day! I know this stuff!

Step 1- Call DHS (Department of Human Services). They will refer you to all the available services in your area for him. The big trick here is getting him declared disabled. There's a whole mess behind that. Assessments, SSI, the whole bit. FORTUNATELY, once that ball is rolling, you're good.

Step 2- get him assessed. My blind DX being what it is, he's definitely got cognitive impairment issues- and he sounds a lot like several of my clients. Now, whether or not that's because he's just ok with wearing cheez whiz or he doesn't have the comprehension to understand that taco-face is bad, we don't know. That's what the assessment is for. Neuro-psych testing will get him a label. I know it sounds dumb, but that's what you want. A label is the key to services. Services get you somewhere.

Step 3- SSI, this is a wildcard. Depending on the level of disability, or if he's even diagnosed, he may or may not qualify for SSI benefits. It's a giant pain in the ass to apply or these, but sometimes a neccesary evil, if he's ever to be off the couch. I have several clients that are either cognitively or physically impaired to the point of being unable to work, they're on disability. I wouldn't go here right off.

Realistically, there are a TON of options and ways to go with this. I don't remember where you are off the top of my head (Illinois?) but there are several routes to take with this, depending on how you want to approach it. If you want, I am more than happy to do a little more digging, or even take this off-board so we can get you pointed in a solid direction. I know it all seems scary and worrisome, but while it might be a bit of a chore, there is a lot you can do for the kid. Just need to know the right people.

mndsm wrote: Hey, these are the people I work with every day! I know this stuff! Step 1- Call DHS (Department of Human Services). They will refer you to all the available services in your area for him. The big trick here is getting him declared disabled. There's a whole mess behind that. Assessments, SSI, the whole bit. FORTUNATELY, once that ball is rolling, you're good. Step 2- get him assessed. My blind DX being what it is, he's definitely got cognitive impairment issues- and he sounds a lot like several of my clients. Now, whether or not that's because he's just ok with wearing cheez whiz or he doesn't have the comprehension to understand that taco-face is bad, we don't know. That's what the assessment is for. Neuro-psych testing will get him a label. I know it sounds dumb, but that's what you want. A label is the key to services. Services get you somewhere. Step 3- SSI, this is a wildcard. Depending on the level of disability, or if he's even diagnosed, he may or may not qualify for SSI benefits. It's a giant pain in the ass to apply or these, but sometimes a neccesary evil, if he's ever to be off the couch. I have several clients that are either cognitively or physically impaired to the point of being unable to work, they're on disability. I wouldn't go here right off. Realistically, there are a TON of options and ways to go with this. I don't remember where you are off the top of my head (Illinois?) but there are several routes to take with this, depending on how you want to approach it. If you want, I am more than happy to do a little more digging, or even take this off-board so we can get you pointed in a solid direction. I know it all seems scary and worrisome, but while it might be a bit of a chore, there is a lot you can do for the kid. Just need to know the right people.

SWMBO pretty much said the same thing @ lunch when I made her read the thread. Get the ball rolling. Getting it started may be hard part, but get it going.

mndsm seems to have the insight.
I have no direct experience but something that seems important heading toward disability is that you have to show that at least on paper, as an individual, he is poor.

He may have funds or a trust set aside for his future but it may be beneficial to get these funds out of his name.

JohnRW1621 wrote: mndsm seems to have the insight. I have no direct experience but something that seems important heading toward disability is that you have to show that at least on paper, as an individual, he is poor. He may have funds or a trust set aside for his future but it may be beneficial to get these funds out of his name.

Guardian ad litem. Most likely his mother right now, and his sister as time goes on. The state will even appoint a case worker than can be appointed as such if the case arises. These people are in charge of the cash and so on and so forth. They also are there to help develop the most comprehensive plan for keeping your son as independent as possible. There's job coaching, job assistance, there's even job placement and places that have jobs for people with limited skill sets socially, physically, and mentally (One place up here is called MRCI). I don't have the slightest idea what they do, but they do it. Years ago when I worked at footlocker (gotta get them J's!) we had two cats come in with their PCAs twice a week to do our trash and stuff. Granted, we did it anyhow ourselves, but they were footlocker employees, came in, did the back room thing, hung out, and left. I'm in no way implying your step-son is that impaired, but they have ALL levels of placement and assistance available across all levels. It's pretty impressive really.

In reply to mndsm:

Awesome! Thank you for the insight!!!

Yes, feel free to PM me through here, or I can email you?

I'm glad that anybody can come here with an issue like this and get constructive replies.