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47 minutes ago, unsinkable said:

Do YOU know how much higher the suicide rate for people with epilepsy is vs general population ?

do YOU know what SUDEP is? And how it happens more with teens and young adults?

 

Nope so I wouldn't presume to give advice on how to parent a young adult with it. 

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14 minutes ago, Catwoman said:

 

IBut nothing changes. The excuses for doing nothing are always the same. I feel sorry for Beth because I know her anxiety makes many things difficult for her. I feel sorry for her son because he’s not moving forward in his life. But I also don’t think her son can keep sitting on the couch all day playing video games. I don’t think it’s healthy to keep excusing him from all responsibility.  Whether or not autism is at play here, this young man is now an adult who needs to learn to function in the real world, and that doesn’t seem to be happening. If he doesn’t get an evaluation (and hopefully cournseling, as well) and Beth continues the same pattern of accepting all of her son’s multiple excuses about why every single job won’t be good for him, we will be right back here in another few months discussing this exact same issue. 

 

Suggesting he get a new evaluation is not what I was talking about. Even Beth agreed with that and contacted her psych to see how to go about doing that. But suggestions to just "make him" or "require him" are not only not helpful, but could have disastrous consequences. 

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1 hour ago, Ktgrok said:

Nope so I wouldn't presume to give advice on how to parent a young adult with it. 

Whatever Katie. You know that's not the point of what I meant.

But this is typical. I've always supported you and you treat me like shit.

Edited to add a link to show how I supported you (and Night Elf, BTW) in a recent thread, which you never even acknowledged.

Also, to point your response here, with its cutesy, folksy, dismissive, *nope* and the rest.

How about, "I didn't know the suicide rate with epilepsy is so much higher but I can imagine how difficult it might be bc it is similar to my own son's situation" 

 but in the typical shitting all over i get, nope!

Nope! Nopesy! Noppers! Nopperino! Noppity, no-diddy-no, nosey!

https://forums.welltrainedmind.com/topic/676908-if-youve-parented-a-teenadult-with-special-needs/?tab=comments#comment-8163311

 

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Wow, I'm totally overwhelmed by all the responses. I tried reading through them but just couldn't. Here are a few things I think I can add.

1. He got a call from Target but he wasn't near his phone. He's going to call the lady back today and see about getting an interview. We looked up information about the position and from what he read, he said he'd really like this job. DH doesn't think he'll get it but that the interview process will be good for him. He's only had two in his life. He got the job the first time and didn't get the job on the second one.

2. He agreed to seriously consider technical school. Our local school has a PC Repair and Network certificate that takes only two semesters and the classes are specific to the job. No GE classes. He said he'd rather go to school than get another stocking job. When I told him that when he graduated the school might place him in a full time position he said he'd rather work full time with computers than part time as a stock clerk again.

3. Ds has been living off his savings. He buys very little. We have not asked him to contribute to the household yet but we did talk to him about it and he said it would be fine. Then we dropped the ball and forgot about it.

4. We have Kaiser Permanente insurance so we're trying to stay within their realm. They do have a formal testing department. Our dd went though extensive testing for her mental issues and we received a very detailed report that she has shared with her counselors and psychiatrist in her college town.

5. DH hasn't pushed ds to do something outside the home but has encouraged him to pursue and research interests. Ds has come up with several ideas which he was actively researching and sharing results with DH. None of them have panned out. Now that the last one has not panned out, DH is telling ds he has to either get a job or go to school. He wants a decision made in two weeks. We chose that long because we're hoping he gets an interview with Target and according to what I've read online, it's not one simple interview for this position, it's a series of interviews with various managers in the store so it may take 1-2 weeks to go through the process if he keeps passing each interview and is able to move on to the next one. We're assuming he should know whether or not he got the job in two weeks. If he doesn't get the job, we'll research school and find out if they would accept him for Spring semester. It's a small school and they may only start two-semester programs in Fall semester. This would mean he wouldn't start school until next August. He said if that happens, he'll consider going back to Kroger in a daytime position until school starts.

6. We're waiting for a response from his Kaiser psychiatrist to see if she'll refer him to testing. I know she will because she's the one who brought up disability and vocational rehab. Ds is willing to do any testing. I don't believe a person can outgrow autism but he's learned to adapt to the problems he had as a kid. He still has ASD traits, they're just not as pronounced. I don't know if he'd be diagnosed under the new guidelines but if they include his experiences as a child, that would help. He is nervous about talking to people but he has learned to do it. He doesn't know how to talk on the phone well. He mumbles. I've been trying to help him speak more clearly. He still doesn't make eye contact when in a conversation. He no longer has tics because the ones that he had at the time his psychiatrist put him on medication have gone away. She suggested he might have Tourettes but he did not want to make an appointment for an evaluation. He couldn't explain why other than the meds are working so why bother.

7. He made A's in college but he didn't like his classes because of the homework and tests. His major was Computer Science but he said he had no real interest in it. It simply was the lesser of all evils. No other major appealed to him. He only took 4 classes and they were all introductory including his pre-Calc class that he could have tested out of, but we chose for him to take it to get the hang of a math class in college. When he started his 3rd semester, he attended the first day of each class and hated the content. That's when he begged us to let him quit school and get a job. We agreed if he would go to counseling and find a part time job fast. He did those things and for about 6 months was the happiest I've seen him since he was a very young boy. Then he started feeling bad about his job and things went downhill from there. He did stay in his job for a year because we suggested he do so, but it was extremely unpleasant for him.

I appreciate all the responses. I do agree with DH that ds has lazy traits, but some of his problems are truly obstacles. It's hard to tell the difference though.

 

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30 minutes ago, Catwoman said:

 

She has always gotten a lot of support and people have repeatedly suggested she get her son evaluated so he would have a proper diagnosis. People have suggested he get more counseling. People have suggested that he work only part time. People have suggested he take only a few college courses at a time. People have suggested all of the things that have been suggested (again) in this thread.

Up until now, he has refused formal testing. I did push for it but I couldn't make him do it. He's an adult. He did work part-time, he took only two college courses a semester. Yes, I've gotten a lot of support and I try to pass it along to ds but again, I can't make him do anything. We can only encourage him. I refuse to give him an ultimatum such as get a job, go to school, or move out. I'm certainly not going to throw him out of our house. I understand some people are into tough love but our parenting style isn't like that. I can't even begin to fathom what he'd do without a place to live or money to survive. What a heartless thing to do to a child regardless of age. 

See my last post about updates. We're doing the best we can.

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Just now, Night Elf said:

Up until now, he has refused formal testing. I did push for it but I couldn't make him do it. He's an adult. He did work part-time, he took only two college courses a semester. Yes, I've gotten a lot of support and I try to pass it along to ds but again, I can't make him do anything. We can only encourage him. I refuse to give him an ultimatum such as get a job, go to school, or move out. I'm certainly not going to throw him out of our house. I understand some people are into tough love but our parenting style isn't like that. I can't even begin to fathom what he'd do without a place to live or money to survive. What a heartless thing to do to a child regardless of age. 

See my last post about updates. We're doing the best we can.

 

Your updates sound very encouraging. I hope your son gets the job at Target, but even if he doesn’t, it’s very encouraging that he wanted to apply.

NO ONE HAS EVER SUGGESTED THAT YOU THROW YOUR SON OUT OF YOUR HOUSE or leave him “without money to survive.” 

NEVER.

That’s ridiculous.

 

 

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2 minutes ago, Catwoman said:

 

Your updates sound very encouraging. I hope your son gets the job at Target, but even if he doesn’t, it’s very encouraging that he wanted to apply.

NO ONE HAS EVER SUGGESTED THAT YOU THROW YOUR SON OUT OF YOUR HOUSE or leave him “without money to survive.” 

NEVER.

That’s ridiculous.

 

 

It is ridiculous but I've seen it talked about in other threads when someone has an adult child living at home and refuses to go out and work. I mentioned it because I don't want anyone to suggest it. I was nipping it in the bud before it could even be mentioned.

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Beth, when I asked about his dad's opinion, I tried to say that in a non-judgmental way. I have a son on the spectrum who had a hard time launching. He had to try a few things, get into trouble because he was a hard worker who would try to manage for too long - even if it was hurting him, get overwhelmed and depressed, and even had to take a few months off from work and school. 

I did not allow video games. For my particular boy, we steered toward extensive fishing, hiking, and boating for a large portion of his day, time in the gym, and a decent bedtime. He was on board for all of this because he knew from childhood that nature, activity, and sleep are his magic formula. We framed it as healing from a too-stressful college experience, to gain strength to try something else.

With a TON of support, and a lot of luck that his ADHD and autism spectrum issues are on the mild end, he got through this. He is now 20, a plumber's apprentice (following his dad in a skilled labor career) and is thriving in every way. He is *happy.* It's like getting the adult version of my happy but hyper and fussy little boy back, and I am loving it. He is terrific at his job and climbing the ranks. He lives at home, with no plans to move out for a long time, which is to the mutual satisfaction of all because he is pleasant and kind. He's also smart, responsible, and brave, so I feel safer having him here if his dad is working out of town.

Anyway. I was not trying to judge. I posted because it was unclear what has been tried...I don't care what anyone says, it IS possible to enable disabled persons. That's a hugely controversial thing to say, but I believe it. Even if a person's "most" that they are giving is a 2 hour volunteer job per day and cooking the family's soup for supper, everyone needs occupation and to be needed. Everyone needs to keep looking for some kind of fulfillment, self-regard, and peace. I'm not saying it's easy or that it might not take years (and money, disability accommodation, and support teams, etc)...but don't stop until you know you've looked under every rock and barked up every tree, so to speak.

We needed to try the gamut of tactics with my son, and we did insist on job searches, etc. but I did not do ultimatums, either. It seemed very, very important for him to feel that I believed in him and was on his side, and that he would be safe here while he figured it out...but he agreed with me that he MUST figure it out. If he didn't think so, I have NO idea what I would have done. 

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22 minutes ago, Night Elf said:

Wow, I'm totally overwhelmed by all the responses. I tried reading through them but just couldn't. Here are a few things I think I can add.

1. He got a call from Target but he wasn't near his phone. He's going to call the lady back today and see about getting an interview. We looked up information about the position and from what he read, he said he'd really like this job. DH doesn't think he'll get it but that the interview process will be good for him. He's only had two in his life. He got the job the first time and didn't get the job on the second one.

2. He agreed to seriously consider technical school. Our local school has a PC Repair and Network certificate that takes only two semesters and the classes are specific to the job. No GE classes. He said he'd rather go to school than get another stocking job. When I told him that when he graduated the school might place him in a full time position he said he'd rather work full time with computers than part time as a stock clerk again.

3. Ds has been living off his savings. He buys very little. We have not asked him to contribute to the household yet but we did talk to him about it and he said it would be fine. Then we dropped the ball and forgot about it.

4. We have Kaiser Permanente insurance so we're trying to stay within their realm. They do have a formal testing department. Our dd went though extensive testing for her mental issues and we received a very detailed report that she has shared with her counselors and psychiatrist in her college town.

5. DH hasn't pushed ds to do something outside the home but has encouraged him to pursue and research interests. Ds has come up with several ideas which he was actively researching and sharing results with DH. None of them have panned out. Now that the last one has not panned out, DH is telling ds he has to either get a job or go to school. He wants a decision made in two weeks. We chose that long because we're hoping he gets an interview with Target and according to what I've read online, it's not one simple interview for this position, it's a series of interviews with various managers in the store so it may take 1-2 weeks to go through the process if he keeps passing each interview and is able to move on to the next one. We're assuming he should know whether or not he got the job in two weeks. If he doesn't get the job, we'll research school and find out if they would accept him for Spring semester. It's a small school and they may only start two-semester programs in Fall semester. This would mean he wouldn't start school until next August. He said if that happens, he'll consider going back to Kroger in a daytime position until school starts.

6. We're waiting for a response from his Kaiser psychiatrist to see if she'll refer him to testing. I know she will because she's the one who brought up disability and vocational rehab. Ds is willing to do any testing. I don't believe a person can outgrow autism but he's learned to adapt to the problems he had as a kid. He still has ASD traits, they're just not as pronounced. I don't know if he'd be diagnosed under the new guidelines but if they include his experiences as a child, that would help. He is nervous about talking to people but he has learned to do it. He doesn't know how to talk on the phone well. He mumbles. I've been trying to help him speak more clearly. He still doesn't make eye contact when in a conversation. He no longer has tics because the ones that he had at the time his psychiatrist put him on medication have gone away. She suggested he might have Tourettes but he did not want to make an appointment for an evaluation. He couldn't explain why other than the meds are working so why bother.

7. He made A's in college but he didn't like his classes because of the homework and tests. His major was Computer Science but he said he had no real interest in it. It simply was the lesser of all evils. No other major appealed to him. He only took 4 classes and they were all introductory including his pre-Calc class that he could have tested out of, but we chose for him to take it to get the hang of a math class in college. When he started his 3rd semester, he attended the first day of each class and hated the content. That's when he begged us to let him quit school and get a job. We agreed if he would go to counseling and find a part time job fast. He did those things and for about 6 months was the happiest I've seen him since he was a very young boy. Then he started feeling bad about his job and things went downhill from there. He did stay in his job for a year because we suggested he do so, but it was extremely unpleasant for him.

I appreciate all the responses. I do agree with DH that ds has lazy traits, but some of his problems are truly obstacles. It's hard to tell the difference though.

 

Beth, this really is growth. That he can consider tech school and working back at Kroger for the short term...that is huge for your son. Hang in there honey!

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Quote

appreciate all the responses. I do agree with DH that ds has lazy traits, but some of his problems are truly obstacles. It's hard to tell the difference though

Yes, it is. I think this is the key phrase in the whole thread. I have been thinking about exploring this in a spin off thread but I don’t have time to manage a thread right now and clearly people get veyr emotional about this subject. 

I have a child with LDs and I have always been trying to figure out where he needs a loving push vs. what things he migt just never be able to do. But also, he might be able if he just attempts it and if the stakes are high enough for him to have to. It has been gratifying to see him blossom in many ways, but I also understand how handicapping emotional distress can be. 

I read through this thread and see people saying, “I don’t like to” can be code for, “it is too stressful” and I want to jump up and down and scream, “ME! ME! ME!” I am a pretty reasonably intelligent person; why is it so hard for me to call the dang alarm company and just tell them we are owed a refund? I mean, God, what’s so hard about it? But it is hard and if there were another grown up around here who would do it so I can escape it, I would be so relieved. But there isn’t, so I have to. So sometimes I have to make myself do this nonsense that I hate like it’s sin and other times I get a merciful escape and someone else will/ca just do it so I can “be lazy” and just go read my books or knit blankets. 

I think it’s always dangerous territory to assume we know better what another poster should do than they know themselves. It’s hard enough to decide when it’s your own kid standing right in front of you because yes, Night Elf, it is hard to know whether a push is the most needful thing, or more support is. I don’t even know for myself. 

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42 minutes ago, Night Elf said:

He made A's in college but he didn't like his classes because of the homework and tests. His major was Computer Science but he said he had no real interest in it. It simply was the lesser of all evils. No other major appealed to him. He only took 4 classes and they were all introductory including his pre-Calc class that he could have tested out of, but we chose for him to take it to get the hang of a math class in college. When he started his 3rd semester, he attended the first day of each class and hated the content. That's when he begged us to let him quit school and get a job. We agreed if he would go to counseling and find a part time job fast. He did those things and for about 6 months was the happiest I've seen him since he was a very young boy. Then he started feeling bad about his job and things went downhill from there. He did stay in his job for a year because we suggested he do so, but it was extremely unpleasant for him.

 

Could he be having depression?

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1 hour ago, unsinkable said:

Whatever Katie. You know that's not the point of what I meant.

But this is typical. I've always supported you and you treat me like shit.

Edited to add a link to show how I supported you (and Night Elf, BTW) in a recent thread, which you never even acknowledged.

Also, to point your response here, with its cutesy, folksy, dismissive, *nope* and the rest.

How about, "I didn't know the suicide rate with epilepsy is so much higher but I can imagine how difficult it might be bc it is similar to my own son's situation" 

 but in the typical shitting all over i get, nope!

Nope! Nopesy! Noppers! Nopperino! Noppity, no-diddy-no, nosey!

https://forums.welltrainedmind.com/topic/676908-if-youve-parented-a-teenadult-with-special-needs/?tab=comments#comment-8163311

 

 

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2 hours ago, Catwoman said:

 

I’m so sorry you didn’t get the support you needed. ?

I can see that a few posters here are very upset by my posts to this thread, but I can’t help but wonder if those same people have seen Beth start what amounts to this exact same thread over and over again in the past. She has always gotten a lot of support and people have repeatedly suggested she get her son evaluated so he would have a proper diagnosis. People have suggested he get more counseling. People have suggested that he work only part time. People have suggested he take only a few college courses at a time. People have suggested all of the things that have been suggested (again) in this thread.

But nothing changes. The excuses for doing nothing are always the same. I feel sorry for Beth because I know her anxiety makes many things difficult for her. I feel sorry for her son because he’s not moving forward in his life. But I also don’t think her son can keep sitting on the couch all day playing video games. I don’t think it’s healthy to keep excusing him from all responsibility.  Whether or not autism is at play here, this young man is now an adult who needs to learn to function in the real world, and that doesn’t seem to be happening. If he doesn’t get an evaluation (and hopefully cournseling, as well) and Beth continues the same pattern of accepting all of her son’s multiple excuses about why every single job won’t be good for him, we will be right back here in another few months discussing this exact same issue. 

No one in this thread is being heartless. We are all concerned about both Beth and her son. But if he does have ASD, making excuses for why he behaves as he does isn’t really helping him if he isn’t also receiving a detailed diagnosis and appropriate treatment so he will be able to get off the couch and get on with his life, even if it’s just a small part time job or a college course or two. In other words, sympathize with his difficulties, but also get him the help he needs. And if the evaluation shows that autism is not the issue, he may still benefit greatly from counseling to help him figure out his path in life.

Thank for your kind words, Cat. (((hugs)))

One thing that helps me when I need support and I don't know where to get it is to tell myself to toughen the f*ck up, that my child needs me, that it is her journey and no matter how badly I feel, it is NOTHING compared to what she is suffering and that she CAN'T do this without me. And if that little self talk doesn't work, I cry and tell myself the same thing when I'm done crying.

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1 hour ago, Night Elf said:

Wow, I'm totally overwhelmed by all the responses. I tried reading through them but just couldn't. Here are a few things I think I can add.

1. He got a call from Target but he wasn't near his phone. He's going to call the lady back today and see about getting an interview. We looked up information about the position and from what he read, he said he'd really like this job.  

 

 

I hope he gets it, it would be great for him to have something new to start soon! 

1 hour ago, Night Elf said:

 I refuse to give him an ultimatum such as get a job, go to school, or move out. I'm certainly not going to throw him out of our house. 

 

 

I wouldn't do that, either, but I'd be okay with making it impossible to sit around all day and play video games. You can't make him get a job or volunteer or even walk outside, but you can turn the router off for a substantial number of hours per day. Maybe lower the air conditioner during the day, lol. That's not cruel to anyone. Everyone needs to be getting out of the house and doing things. Sometimes people need a little push, and you can structure the environment to make doing other things more pleasant than sitting in the house. If he prefers to sit in the house and basically do nothing, I'd consider depression or worsening anxiety (I can't remember if this has been addressed with him, I know he has a psych, but you might need to give a little input on what is happening and how little he is doing). If he walks to the library or someone's house to play video games . . . well, at least he walked out of the house! You can keep going from there. 

Note: If his phone can hotspot, and you're paying for it, look for a plan without that ability. 

Do you or dh have the patience to work alongside him on household tasks? He might need the push to get started and keep focused. It might not be of much help in the short term, but I think any activity, particularly productive activity, will be good for him. 

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6 minutes ago, unsinkable said:

One thing that helps me when I need support and I don't know where to get it is to tell myself to toughen the f*ck up, that my child needs me, that it is her journey and no matter how badly I feel, it is NOTHING compared to what she is suffering and that she CAN'T do this without me. And if that little self talk doesn't work, I cry and tell myself the same thing when I'm done crying.

1

 

Good for you, mama! Having kids has caused me to be braver than I would have been otherwise, that's for sure. Sometimes because they absolutely need it, sometimes because I'm trying to model certain behavior. 

My nephew had epilepsy with uncontrolled seizures when he was younger, and it was absolutely terrifying. I don't know how parents cope. He was, I don't know if "cured" is the right word, but he has not had seizures (or treatment) in over a decade. I hope your dd winds up with a good outcome as well. 

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3 minutes ago, katilac said:

 

Good for you, mama! Having kids has caused me to be braver than I would have been otherwise, that's for sure. Sometimes because they absolutely need it, sometimes because I'm trying to model certain behavior. 

My nephew had epilepsy with uncontrolled seizures when he was younger, and it was absolutely terrifying. I don't know how parents cope. He was, I don't know if "cured" is the right word, but he has not had seizures (or treatment) in over a decade. I hope your dd winds up with a good outcome as well. 

Thank you, katilac. I love hearing positive stories like your nephew's.

Unfortunately, DD's epilepsy has only got worse as she has grown older, it is intractable at this point and has been for years. I do believe in miracles, and medicine, and the inexplicable so maybe some day, we will find the right combination of meds.

 

 

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13 minutes ago, unsinkable said:

Thank you, katilac. I love hearing positive stories like your nephew's.

Unfortunately, DD's epilepsy has only got worse as she has grown older, it is intractable at this point and has been for years. I do believe in miracles, and medicine, and the inexplicable so maybe some day, we will find the right combination of meds.

 

 

 

I know you guys have looked at a million things, but I wanted to let you know that the keto diet is what worked for my nephew, they could not find effective medications for him. 

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28 minutes ago, katilac said:

 

I know you guys have looked at a million things, but I wanted to let you know that the keto diet is what worked for my nephew, they could not find effective medications for him. 

Thanks. We tried it when she was younger and it didn't reduce her seizures. Plus it made her feel sick all the time with intestinal issues. 

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4 hours ago, unsinkable said:

Whatever Katie. You know that's not the point of what I meant.

But this is typical. I've always supported you and you treat me like shit.

 

Seriously? How did we get to this? My post about how people shouldn't presume to say "just require it" or "don't let him" or "just make him" were NOT about your posts at all. I don't know why you thought they were attacking you, they were directed at the posters saying those things, not you. They had nothing to even do with you or what you were saying (which was about evaluations/help and which I agree with!). 

So to be very clear, my post with all that emotion in it was NOT about what you were saying. But other posters were saying he was just lazy, and if she wouldn't let him be lazy he wouldn't be. You didn't say that, so I don't know why you thought my post was directed at you? 

As for not replying to your comment in another thread, I very likely missed it. I often have a toddler in my lap nursing, or am on my phone while taking the dog for a walk, or sitting in a parking lot waiting for the kids to get buckled, and often end up missing posts when I reply to one and then try to go back and find my place. It wasn't personal. I certainly can't remember ever treating you "like shit" in any way. In the thread on Catholicism we had a misunderstanding, which I thought got cleared up, but other than that, I have no idea what you are talking about or why you are making this about you personally. 

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Update: Target called to tell ds the position he applied for was no longer available and would he be interested in another position. He asked what they had and they said deli and produce. He told them he wasn't interested. I'm bummed he didn't get to interview for the security position but totally understand he doesn't want to work in food.

He said he would look into some other positions and he still had school on the back burner. I asked if he wanted to go ahead and start the application process for school to even see if he could begin in January but he said not right now. 

So I don't know what he'll do. I feel bad for him but am worried he'll let this setback affect his job hunting. This is the second job he's applied for that he didn't get. 

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That's a bummer that he didn't get the job.  But try to encourage him.  I know several people who graduated from college In June with degrees in "hot" fields and are just getting bites after sending out over 100 resumes.  

Most people don't get offered every job they apply for.  I think now most people don't even hear back, so he's doing well even knowing.  I'm in a very different category than he is - applying for job after 20 years as a homeschool mom - but after sending out probably 20 cover letters/resumes, I only heard back from one. The only reason I am working now is because I got a direct referral to the company owner from an acquaintance, and they were desperate so took a chance on me. 

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2 hours ago, Ktgrok said:

Seriously? How did we get to this? My post about how people shouldn't presume to say "just require it" or "don't let him" or "just make him" were NOT about your posts at all. I don't know why you thought they were attacking you, they were directed at the posters saying those things, not you. They had nothing to even do with you or what you were saying (which was about evaluations/help and which I agree with!). 

So to be very clear, my post with all that emotion in it was NOT about what you were saying. But other posters were saying he was just lazy, and if she wouldn't let him be lazy he wouldn't be. You didn't say that, so I don't know why you thought my post was directed at you? 

As for not replying to your comment in another thread, I very likely missed it. I often have a toddler in my lap nursing, or am on my phone while taking the dog for a walk, or sitting in a parking lot waiting for the kids to get buckled, and often end up missing posts when I reply to one and then try to go back and find my place. It wasn't personal. I certainly can't remember ever treating you "like shit" in any way. In the thread on Catholicism we had a misunderstanding, which I thought got cleared up, but other than that, I have no idea what you are talking about or why you are making this about you personally. 

You mentioned suicide and depression in your post. "by that point the potential consequences could be literally life threatening. As much as I worry about my kid and acareer/school/life, what keeps me up at night is worrying if he will freaking LIVE. Suicide is not an abstract, uncommon thing in this population. "

I quoted that post and asked you, rhetorically, if you knew the suicide rate for those with epilepsy vs general population, and asked you if you knew that SUDEP affected teens and young adults more.

My point was it doesn't matter if someone know the specific rates of it, that people can be sympathetic and kind and be working to find solutions and common ground with out the ni tty gritty details. BC afterall, we all want our kids alive and happy and content and fulfilled, right? 

But based on your "Nope!" reply, not only don't you agree that we can help each other, you don't even care.

You know my DD has epilepsy. You know her name. I've told you. So when you write what you did "Nope so I wouldn't presume to give advice on how to parent a young adult with it" what you are saying is,  " Nope, I don't care enough about Maeve* and her higher risk of suicide and her higher risk of death, even though I'm dealing with something similar. "

 

 

*not her real name but Katie, you've been told it, along with my other kids

 

Edited by unsinkable
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2 hours ago, Night Elf said:

 

Update: Target called to tell ds the position he applied for was no longer available and would he be interested in another position. He asked what they had and they said deli and produce. He told them he wasn't interes

 

 

That’s actually really nice to have had trying for another position suggested!

Out Of curiosity why doesn’t he want to deal with food?  

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1 hour ago, unsinkable said:

You mentioned suicide and depression in your post. "by that point the potential consequences could be literally life threatening. As much as I worry about my kid and acareer/school/life, what keeps me up at night is worrying if he will freaking LIVE. Suicide is not an abstract, uncommon thing in this population. "

I quoted that post and asked you, rhetorically, if you knew the suicide rate for those with epilepsy vs general population, and asked you if you knew that SUDEP affected teens and young adults more.

My point was it doesn't matter if someone know the specific rates of it, that people can be sympathetic and kind and be working to find solutions and common ground with out the ni tty gritty details. BC afterall, we all want our kids alive and happy and content and fulfilled, right? 

But based on your "Nope!" reply, not only don't you agree that we can help each other, you don't even care.

You know my DD has epilepsy. You know her name. I've told you. So when you write what you did "Nope so I wouldn't presume to give advice on how to parent a young adult with it" what you are saying is,  " Nope, I don't care enough about Maeve* and her higher risk of suicide and her higher risk of death, even though I'm dealing with something similar. "

 

 

*not her real name but Katie, you've been told it, along with my other kids

 

I'm so confused. I pointed out that the advice some people were giving (not you) could be dangerous due to the risks of suicide in those on the spectrum. You then brought up your daughter also being at higher risk, but that doesn't make the advice that I was talking about less dangerous. It probably is part of why you didn't give that kind of advice, as you too struggle with those worries. But again, that doesn't make the specific advice I was talking about less concerning. 

As for your daughter's name, I don'tt know ANYONE's name hardly, which I have posted about here in fact. I have terrible working memory and can't remember faces OR names, which has led to incredible social anxiety. But none of what I posted was meant to be dismissive of your concern but to explain the concerns I and others have. 

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2 minutes ago, Ktgrok said:

I'm so confused. I pointed out that the advice some people were giving (not you) could be dangerous due to the risks of suicide in those on the spectrum. You then brought up your daughter also being at higher risk, but that doesn't make the advice that I was talking about less dangerous. It probably is part of why you didn't give that kind of advice, as you too struggle with those worries. But again, that doesn't make the specific advice I was talking about less concerning. 

As for your daughter's name, I don'tt know ANYONE's name hardly, which I have posted about here in fact. I have terrible working memory and can't remember faces OR names, which has led to incredible social anxiety. But none of what I posted was meant to be dismissive of your concern but to explain the concerns I and others have. 

I've told you her name in PMs. And her siblings, and other of my family members bc your family and mine share some of the same  names.

if you don't remember, so be it. But I trusted you enough to tell you.

I think I'm done. Maybe. I probably should be. Or maybe not. 

 

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8 minutes ago, unsinkable said:

I've told you her name in PMs. And her siblings, and other of my family members bc your family and mine share some of the same  names.

if you don't remember, so be it. But I trusted you enough to tell you.

I think I'm done. Maybe. I probably should be. Or maybe not. 

 

I think yeah, maybe. I feel like you misunderstood her intent. We’re all trying to do the best we can with our kids who have difficulties - you are, I am, Night Elf is, Katie is. 

 

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6 minutes ago, Quill said:

I think yeah, maybe. I feel like you misunderstood her intent. We’re all trying to do the best we can with our kids who have difficulties - you are, I am, Night Elf is, Katie is. 

 

Are you telling me to be done? 

I'm no quitter.

(I mean, I'm not going to be ignored, Dan. LOL)

It's pretty clear, Quill, that there is a script that must be followed and deviations are not tolerated.

 

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6 minutes ago, unsinkable said:

Are you telling me to be done? 

I'm no quitter.

(I mean, I'm not going to be ignored, Dan. LOL)

It's pretty clear, Quill, that there is a script that must be followed and deviations are not tolerated.

 

 

I am sorry your daughter has epilepsy. 

As far as some of your posts in this thread go, 

I think communication got derailed somehow. 

????

Confused ?‍♀️ emoji.  

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48 minutes ago, unsinkable said:

I've told you her name in PMs. And her siblings, and other of my family members bc your family and mine share some of the same  names.

if you don't remember, so be it. But I trusted you enough to tell you.

I think I'm done. Maybe. I probably should be. Or maybe not. 

 

And I'm sorry I don't remember it. Again, this is an issue with me, to the point of being a hinderance in my daily life. I've struggled to remember the names/faces of coworkers I saw on a daily basis, this isn't personal. But I don't know why you got upset with me in the first place? We were discussing advice for the OP's son. I said that some of the advice, given by other posters (not you) was dangerous and explained why. You, for no reason I can fathom, got angry with me and brought up your daughter. Then told me I treated you like shit. Again, nothing I said had anything to do with you, your posts, your advice, or your family. My concern about people with ASD and mental health doesn't mean others don't also struggle with mental health. Or that your daughter's life is any less difficult than it is. I was addressing other people, and you jumped all over me, and I still have no idea why.  

And to clarify, I don't forget people, I just don't know their names and I can't recognize them. Which sounds like forgetting the person but isn't the same thing. Kind of like some people don't know street names but know landmarks, I have ways I remember the person, just not the name/face. I literally forget my next door neighbor's names on a regular basis and have to ask my husband, but I know their habits, jobs, favorite cupcake flavor, etc. I just don't remember their names. It truly isn't a personal slight or means I don't care about you or your family, truly. 

Edited by Ktgrok
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18 minutes ago, unsinkable said:

Are you telling me to be done? 

I'm no quitter.

(I mean, I'm not going to be ignored, Dan. LOL)

It's pretty clear, Quill, that there is a script that must be followed and deviations are not tolerated.

 

Aww, come on Sink. Quitting is good sometimes. Remember cigarettes? Even Diet Coke. 

I feel an Elsa moment coming on...

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31 minutes ago, Ktgrok said:

And I'm sorry I don't remember it. Again, this is an issue with me, to the point of being a hinderance in my daily life. I've struggled to remember the names/faces of coworkers I saw on a daily basis, this isn't personal. But I don't know why you got upset with me in the first place? We were discussing advice for the OP's son. I said that some of the advice, given by other posters (not you) was dangerous and explained why. You, for no reason I can fathom, got angry with me and brought up your daughter. Then told me I treated you like shit. Again, nothing I said had anything to do with you, your posts, your advice, or your family. My concern about people with ASD and mental health doesn't mean others don't also struggle with mental health. Or that your daughter's life is any less difficult than it is. I was addressing other people, and you jumped all over me, and I still have no idea why.  

And to clarify, I don't forget people, I just don't know their names and I can't recognize them. Which sounds like forgetting the person but isn't the same thing. Kind of like some people don't know street names but know landmarks, I have ways I remember the person, just not the name/face. I literally forget my next door neighbor's names on a regular basis and have to ask my husband, but I know their habits, jobs, favorite cupcake flavor, etc. I just don't remember their names. It truly isn't a personal slight or means I don't care about you or your family, truly. 

 

Genuine question: did you not see the part where I said, "if you don't remember her name so be it. But I trusted you enough to tell you."

 I trusted you enough to tell you my family's names. I don't care that you forgot them now. I cared enough that at one point, I thought we were friends and now you make comments like The Nope Comment.

 

 

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10 minutes ago, unsinkable said:

 

Genuine question: did you not see the part where I said, "if you don't remember her name so be it. But I trusted you enough to tell you."

 I trusted you enough to tell you my family's names. I don't care that you forgot them now. I cared enough that at one point, I thought we were friends and now you make comments like The Nope Comment.

 

 

I posted that meaning, I know enough of my own ignorance on that (suicide risk in kids/adults with epilepsy) to not advise someone on that. Not because I don't care, but because I care enough to not want to say something that could make it worse. My intent was to express an abundance of caution, not a lack of caring. Again, at no point was I trying to be antagonistic! I didn't even disagree with your posts to the OP! I thought you gave rational advice, and had no ill will towards you at all, which was why I felt so blindsided by what felt like an out of the blue attack. I was expressing concerns and you seemed to be yelling at me for talking about the suicide risks in ASD teens/young adults...because I didn't include other medical issues or something I guess? I still really don't understand what I did to initially upset you. I certainly didn't mean to. I was addressing other people and then you got all upset with me, and brought up your daughter's illness. You were upset with me (it seemed) before I made the Nope reply, and I don't know why or why you think I treated you like shit. I wasn't even addressing you. I really feel like we are reading different conversations or something. I thought we were friends too, which was why I don't understand where any of this is coming from. 

Edited by Ktgrok
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2 hours ago, Night Elf said:

I don't know. He just doesn't want to do anything with food. 

 

After I asked I thought maybe deli with lots of speed needed and maybe sharp cutting machines for meat slicing etc could be too hard and perhaps dangerous for him. 

But I had a young adult job in produce that I enjoyed, and I cannot think of anything about it that would be an ASD problem. 

 

ETA:

This seems to me like an area where he could use a coach to teach him not to be so quick to dismiss potential opportunities.  He could have a way, if something like that happened in future, of expressing appreciation to the person suggesting he apply for something else and saying he’ll think about it. 

Edited by Pen
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15 minutes ago, Pen said:

 

After I asked I thought maybe deli with lots of speed needed and maybe sharp cutting machines for meat slicing etc could be too hard and perhaps dangerous for him. 

But I had a young adult job in produce that I enjoyed, and I cannot think of anything about it that would be an ASD problem. 

 

ETA:

This seems to me like an area where he could use a coach to teach him not to be so quick to dismiss potential opportunities.  He could have a way, if something like that happened in future, of expressing appreciation to the person suggesting he apply for something else and saying he’ll think about it. 

yes, I agree. Teaching him to say, "Let me think about it" might be good, if anything unexpected comes up. 

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10 minutes ago, Pen said:

 

After I asked I thought maybe deli with lots of speed needed and maybe sharp cutting machines for meat slicing etc could be too hard and perhaps dangerous for him. 

But I had a young adult job in produce that I enjoyed, and I cannot think of anything about it that would be an ASD problem. 

 

ETA:

This seems to me like an area where he could use a coach to teach him not to be so quick to dismiss potential opportunities.  He could have a way, if something like that happened in future, of expressing appreciation to the person suggesting he apply for something else and saying he’ll think about it. 

A coach could also help him explore why he doesn't want to work in a certain area. As has been said, he may only be able to articulate "I don't want to" but a coach could help him figure out and state the reason. He may have preconceived notions of what it means to work with food which could be incorrect, and perhaps once that was explained to him, the job would be fine. Or not, but if it's left at "I don't want to" then there's no way to know.

One of my kids will say "I don't want to" do this or that kind of work. Sometimes when we get him to explain why, it turns out he is wrong.He doesn't have the complication of ASD (though as I said, he has some characteristics) so it's probably a bit easier to tease the reason out of him. But someone who knows how to work with ASD folks might be helpful there.

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3 minutes ago, marbel said:

A coach could also help him explore why he doesn't want to work in a certain area. As has been said, he may only be able to articulate "I don't want to" but a coach could help him figure out and state the reason. He may have preconceived notions of what it means to work with food which could be incorrect, and perhaps once that was explained to him, the job would be fine. Or not, but if it's left at "I don't want to" then there's no way to know.

One of my kids will say "I don't want to" do this or that kind of work. Sometimes when we get him to explain why, it turns out he is wrong.He doesn't have the complication of ASD (though as I said, he has some characteristics) so it's probably a bit easier to tease the reason out of him. But someone who knows how to work with ASD folks might be helpful there.

That’s true. When I was a teen, I had two older sisters. One of them would always say, “Well I’m not getting a job at a fast food place!” (That was where a lot of teens got their jobs.) I adopted that, too, even though I never had a reason. I guess it just seemed like my sister, being older, must know why, so I never considered a job in fast food...and even after I did get a job, I remember I would proudly say, “At least it’s not McDonald’s!” But I never did think critically about those jobs; just went to, “No,” because someone whom I looked up to had said that. 

(I’m not suggesting this is precisely the case for Night Elf’s son; just that it is often worth probing beneath the surface a bit) 

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He did say he didn't want to work in fast food so it's possible he's thinking that any job related to food would not be good. I don't know. I'll ask him tonight when I get home from work. I told him he should reconsider the hardlines job at Target. I looked that up and it's just products made of hard materials like furniture, electronics and jewelry. I don't think that sounds bad at all. There is an opening at the Target that is closer to my job which would make it tons easier to get him to instead of that other Target he was looking at.

We also talked about a seasonal job. It would be short term and give him more work experience. If he liked it, he might find a similar job. If he didn't like it, he'd know not to pursue a similar situation.

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12 hours ago, Pen said:

 

I am sorry your daughter has epilepsy. 

As far as some of your posts in this thread go, 

I think communication got derailed somehow. 

????

Confused ?‍♀️ emoji.  

I have another child whose diagnosis overlaps ASD in many ways. But I won't post my experience or even ask questions much any more. 

The reactions to dissenting opinions and advice in this thread are why. The acceptable responders are chopping away at what they want to hear and who they want to hear from. There is no acceptance of differing thoughts or communication styles. There is no grace extended for people who might have good intentions but flub up a response or misunderstand the particulars.

It's just chop. chop. chop.

Soon, the acceptable people will turn on each other, and the chopping will commence even with those who previously met the posting standards (which now seem to be having a child with ASD, diagnosed or suspected, and those who agree with everybody who meets those standards).

I see a value in listening to people outside my experience. I try to tell myself that if I ask for advice, the people responding are responding to help. People on the outside can sometimes see clearly in a way I can't. They are certainly looking at the situation from a different angle.

And even if an uninformed bit of advice would not work, it might spark an idea in me or in someone other poster that WOULD work (the "Hey, hold my beer! I have an idea" moment).

 

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10 minutes ago, Night Elf said:

He did say he didn't want to work in fast food so it's possible he's thinking that any job related to food would not be good. I don't know. I'll ask him tonight when I get home from work. I told him he should reconsider the hardlines job at Target. I looked that up and it's just products made of hard materials like furniture, electronics and jewelry. I don't think that sounds bad at all. There is an opening at the Target that is closer to my job which would make it tons easier to get him to instead of that other Target he was looking at.

We also talked about a seasonal job. It would be short term and give him more work experience. If he liked it, he might find a similar job. If he didn't like it, he'd know not to pursue a similar situation.

It is my understanding that hardlines is any section of Target that doesn't have carpet. In the sections like beauty, pet food and cleaning supplies, it is a lot of stock ing, facing and fronting merchandise.

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38 minutes ago, unsinkable said:

I have another child whose diagnosis overlaps ASD in many ways. But I won't post my experience or even ask questions much any more. 

The reactions to dissenting opinions and advice in this thread are why. The acceptable responders are chopping away at what they want to hear and who they want to hear from. There is no acceptance of differing thoughts or communication styles. There is no grace extended for people who might have good intentions but flub up a response or misunderstand the particulars.

It's just chop. chop. chop.

Soon, the acceptable people will turn on each other, and the chopping will commence even with those who previously met the posting standards (which now seem to be having a child with ASD, diagnosed or suspected, and those who agree with everybody who meets those standards).

I see a value in listening to people outside my experience. I try to tell myself that if I ask for advice, the people responding are responding to help. People on the outside can sometimes see clearly in a way I can't. They are certainly looking at the situation from a different angle.

And even if an uninformed bit of advice would not work, it might spark an idea in me or in someone other poster that WOULD work (the "Hey, hold my beer! I have an idea" moment).

 

 

Well, I have noticed that happen sometimes. Including that my comments are sometimes ones that don’t fit the general mainstream of this forum. But I think I don’t let myself get as upset about it—or at least try not to. 

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2 hours ago, Quill said:

That’s true. When I was a teen, I had two older sisters. One of them would always say, “Well I’m not getting a job at a fast food place!” (That was where a lot of teens got their jobs.) I adopted that, too, even though I never had a reason. I guess it just seemed like my sister, being older, must know why, so I never considered a job in fast food...and even after I did get a job, I remember I would proudly say, “At least it’s not McDonald’s!” But I never did think critically about those jobs; just went to, “No,” because someone whom I looked up to had said that. 

(I’m not suggesting this is precisely the case for Night Elf’s son; just that it is often worth probing beneath the surface a bit) 

 

I have seen things like that with my son—or opposite, but same imitative reasons.  He has friends who have had fast food jobs, so he wants a fast food job too.

But has said “I wouldn’t want to work at _____” with regard to something that I think would fit him better. But it isn’t what his friends have done. 

Some of this could also be related to teen/young adult rebellion against parents and gravitation toward peer influence. 

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56 minutes ago, unsinkable said:

I have another child whose diagnosis overlaps ASD in many ways. But I won't post my experience or even ask questions much any more. 

The reactions to dissenting opinions and advice in this thread are why. The acceptable responders are chopping away at what they want to hear and who they want to hear from. There is no acceptance of differing thoughts or communication styles. There is no grace extended for people who might have good intentions but flub up a response or misunderstand the particulars.

It's just chop. chop. chop.

Soon, the acceptable people will turn on each other, and the chopping will commence even with those who previously met the posting standards (which now seem to be having a child with ASD, diagnosed or suspected, and those who agree with everybody who meets those standards).

I see a value in listening to people outside my experience. I try to tell myself that if I ask for advice, the people responding are responding to help. People on the outside can sometimes see clearly in a way I can't. They are certainly looking at the situation from a different angle.

And even if an uninformed bit of advice would not work, it might spark an idea in me or in someone other poster that WOULD work (the "Hey, hold my beer! I have an idea" moment).

 

Again, I don't think anyone had a problem with any of the advice you shared. I know I didn't. 

I only responded, and yes, it was emotional, when some of the advice given by others was, I felt, potentially dangerous. Just as someone who offered medical advice to you, whiteout knowing about the ins and outs of epilepsy, might post potentially dangerous advice. Not out of malice, but ignorance to the intricacies of the subject at hand. And it wouldn't be out of line to label it as such. 

I'm sorry you don't feel you can share. Again, I had no issue with any advice you offered in this thread. 

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14 minutes ago, Ktgrok said:

Again, I don't think anyone had a problem with any of the advice you shared. I know I didn't. 

I only responded, and yes, it was emotional, when some of the advice given by others was, I felt, potentially dangerous. Just as someone who offered medical advice to you, whiteout knowing about the ins and outs of epilepsy, might post potentially dangerous advice. Not out of malice, but ignorance to the intricacies of the subject at hand. And it wouldn't be out of line to label it as such. 

I'm sorry you don't feel you can share. Again, I had no issue with any advice you offered in this thread. 

 

I’m still unclear as to why you thought anyone’s advice was potentially dangerous.

The most extreme suggestion was that Beth’s son should either get a part time job or return to school part time. 

You seem to be suggesting (please correct me if I’m misunderstanding you) that her son could become suicidal because of that kind of requirement. 

But Beth has insisted time and time again that her son is not depressed. She says he is happy. He has been successful at the college courses he took. He was successful at his job at Kroger. He seems to be doing fine as a volunteer.

I know your heart is in the right place, but I also feel like you may be trying to support a narrative that doesn’t exist in this situation. Beth’s own words have told us that her son is not depressed, so I think it’s a pretty big leap to suggest that he could become suicidal if he was given a choice between working part time and going to school part time. These aren’t particularly harsh suggestions.

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2 hours ago, Pen said:

 

Well, I have noticed that happen sometimes. Including that my comments are sometimes ones that don’t fit the general mainstream of this forum. But I think I don’t let myself get as upset about it—or at least try not to. 

Yeah, there is often a pattern of someone asking a question, people trying to answer the question by giving their opinions or thoughts or experiences which may or may not exactly match the situation in the original post, then other posters come in and start scolding people who are giving the wrong answers.  It can make someone decide to keep quiet in the future, even if they may have similar experience and something to add.  

ETA: When someone comes to a general board with a question, they are potentially going to get input from a wide range of people. I assume any parent posting is going to reject advice that they see as inappropriate for their child. When I've asked for advice and opinions here, some of the suggestions I've gotten are based on wildly inaccurate assumptions. That's OK. They might make me think about something else. Or I can ignore the advice.  Or I could put something in the title that makes it clear I only want to hear from people who have experience with X.

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7 minutes ago, Catwoman said:

 

I’m still unclear as to why you thought anyone’s advice was potentially dangerous.

The most extreme suggestion was that Beth’s son should either get a part time job or return to school part time. 

You seem to be suggesting (please correct me if I’m misunderstanding you) that her son could become suicidal because of that kind of requirement. 

But Beth has insisted time and time again that her son is not depressed. She says he is happy. He has been successful at the college courses he took. He was successful at his job at Kroger. He seems to be doing fine as a volunteer.

I know your heart is in the right place, but I also feel like you may be trying to support a narrative that doesn’t exist in this situation. Beth’s own words have told us that her son is not depressed, so I think it’s a pretty big leap to suggest that he could become suicidal if he was given a choice between working part time and going to school part time. These aren’t particularly harsh suggestions.

These are not harsh suggestions for a neurotypical person, but I can assure you that, depending on the person, they can be harsh for some people with ASD. A lot of scaffolding is required, which is what Beth is working on. That's what she is talking about in this thread. This will be a slow process, not a fast one. Additionally, you are looking at only part of the story. He was successful at college - yet he left because it wasn't a good match and he was anxious and unhappy. He was successful at work - yet he left because he was stressed out over the work production needs and having to work too many (for him) hours. The needs of people with ASD are complex.

Those of us who know about adults with ASD know that the unemployment rate and the suicide rate is high. That is what Katie is commenting on, not just on Beth's particular situation. I've been the one who has had to call the police for a safety check - believe me the risk it isn't something we can take lightly. That's the type of information we live with. It is necessary for us to do a risk/benefit analysis for everything, and suicide, depression and chronic unemployment are real risks that are in the back of our minds for every change that happens in life. Katie is simply bringing those risks & fears into the conversation, as a response to my post about how those of us who have children with disabilities don't often talk about it because we are judged so harshly, and here you are telling her that her input isn't appropriate. Yet, it actually is very appropriate. My heart hurts for the parent of every child with a hidden disability when I hear or read dialogue like this. This is a conversation that needs to be had, and I think you are actually the one that is not understanding the narrative.

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