What I wish I had known 3 yrs ago....helping our ds navigate adulthood

[8filltheheart]

I have shared in the past how difficult it has been finding appropriate services for our Aspie ds as an adult or even figuring out how to go about helping him find a suitable path for adulthood.

 

Over the last 2 yrs it has become very apparent that while ds is a good student (he has made the dean's list each semester), the classes are not leading him closer to a degree w/a job he will be able to complete and maintain at the other end. (ds is intelligent, but lacks many of the skills required for maintaining a job like being able to determine that if x and y are necessary that he should go ahead and do z as well. He will do exactly what is stated, no more/no less. He also gets very aggitated when he is required to improvise or problem-solve w/o constant assistance.)

 

We had met with the Dept of Rehabilitative Services months ago, but at that time the man we met with did not provide us w/any guidance or services other than qualifying ds for the disability van service since ds doesn't drive.

 

Well, he has retired and his replacement is an energetic man that is just full of information. He told us that he has worked w/numerous Aspies and that ds is not unique. He has several clients that actually have multiple bachelors degrees that were unable to maintain employment. (our fear for ds all along)

 

Anyway, to get to the pt!! he has set up a course of action for ds and for the very first time, this seems like a realistic plan that will actually lead to ds having a certain degree of independence.

 

First: we are seeking SSI for ds. We should have done this when he turned 18. Based on the documentation that DRS has, he assured us that he believes ds will have no problem qualifying.

 

Second: Ds will begin what they call employment assessment training. Unlike its name, it is not training. ;) Ds will be volunteering for Goodwill and will be evaluated on-site by a professional who will provide feedback to the DRS about ds's skills/abilities, etc (basically how he functions and responds to directions, problem-solving, pace (a reason that the DRS counselor stated as a problem for many Aspies maintaining employment), etc.

 

Third: After the assessment training, he will receive job coaching. This a service where he has a personal coach that helps him apply for jobs, helps him interview, and even goes on-site of the new employment and works w/him to learn the job until he is able to perform it independently.

 

I wish I had all this information ds's sr yr of high school. DRS offers other services as well, but these are the main ones that we are focusing on now. Our main objective is to get him functioning at least on a semi-independent level vs. the completely dependent level he is right now. (FWIW, ds is 20.)

Edited May 20, 2012 by 8FillTheHeart

[swimmermom3]

:grouphug:This is so good to hear. I know you wish you had the information when he was 18, but you did not. The good news is that you now have a realistic, workable plan and can move forward again. Everything you have done for this child, you have done to the very best of your ability at the time. You have not done it in ignorance, but after research and reflection. That is what good parents do and you are definitely a good parent.

 

Don't let that certain type of guilt get to you.;) What could or should have beens will suck the steam and spirit right out of you. I should know.:tongue_smilie:

 

Doing the happy dance here for you. It's a good thing you can't see me. I just scared the cat.:D

[SonshineLearner]

Wow, that's incredible!! :) I'm happy for you! 20 is still young and it's quite possible that that time between 18 and 20 will just provide the base he needs for the rest of his life. Good for you that someone new is there!! :)

[Beth in SW WA]

Wow, that's incredible!! :) I'm happy for you! 20 is still young and it's quite possible that that time between 18 and 20 will just provide the base he needs for the rest of his life. Good for you that someone new is there!! :)

 

:iagree::grouphug:

[MicheleinMN]

This is wonderful news and thank you for sharing it!

 

I know it is hard to not wish you had had this help/information earlier, but as timing is everything, and not in our hands, NOW must be the perfect time for you and your ds to have it. :)

 

Parenting is tough...parenting an auspie is probably more than I can imagine, though I really can imagine quite a bit.

[dalynnrmc]

Thank you so much for posting this! Our ds is 13 and we are considering looking into some of the assistance you mentioned for him NOW. He currently does not have a dx, but I have no doubt of his getting one if only we pursue it. I worry some about what he WONT be able to do if he has this dx and is, say, on SSI, even if he has the ability, desire, and motivation to do so. I don't want to put yet another obstacle in his pathway if it turns out he's one who will be able to find his "niche" and "shine," but at the same time there is so much he and we could get out of it NOW I really feel like I may be doing our family a disservice by not seeking the help while we need the help.

 

Thank you for your honest thoughts and transparency in your situation! God bless you!

[Pen]

I am super glad you are getting what sounds like better help now.

 

That our children won't be able to be independent adults is such a huge worry, I think.

 

I want also to let you know that a friend of mine has a son who did a Good Will training program. It was very helpful. It gave the start of work practice and from there he was able to get a store job. He was not able to live independently, but it did help him become a productive and happy member of the household. The reasons he could not live independently were things that may not apply in your son's case, however. Also, I wanted to mention that another friend has a son who is working as a barista because they give absolute precise directions as to what needs to be done, how much and when, no need for thinking things out on one's own. It does take some interaction with other people, though which in his case he can handle, but not all ASD people do handle that. Anyway, it had no improvisation or problem solving, they want the coffee drinks made exactly to specifications every time.

Edited May 21, 2012 by Pen

[rafiki]

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[8filltheheart]

Wonderful news.

 

If you knew then what you know now, is there anything you would have done differently earlier on?

 

Honest answer--everything. Yrs ago a therapist told us that all the education in the world wouldn't matter if ds couldn't hold a job. He made me so angry. Our ds was (is) intelligent. We were convinced that he could do whatever he wanted. (If Temple Grandin and all the other famous autistic/Asperger adults could do it, surely he could too!) Well, we were wrong.

 

Last yr we started becoming more realistic and thought that helping him learn a trade would be a better fit and we started pursuing that route. Unfortuantely, that is still not realistic.

 

If I could go back and do it all over again, I would take all the money we have spent on education (which is a huge number.......a yr in private high school, 2 yrs of CC (which is still expensive in our state), but even far more costly was the Aspergers college assistance program that we put him in this yr (meant to help them succeed in college---ds was significantly more prepared than all the other students academically. He can succeed in school. That is not what he needs for employability) um, back to the original thought :tongue_smilie: I would take that money and try to establish him in his own small business that would make him feel productive and generate a small income (but we would oversee his expenses, etc.)

 

Colleges provide accommodations for extra time, etc. Employers don't. If he can't produce the same output as typical employees, he won't keep a job. If he can't work as fast, as independently, as non-distracted as the next applicant in the pile, he won't keep a job.

 

Our sights are much, much lower these days. He needs a completely rote job. If he could maintain a job as grocery store stocker or bagger I would be thrilled.

 

So, if I went back even further, I would have stressed far less about academics and focused far more on developing an interest for a quasi-small business. (ds is an excellent artist. We could have established a small studio for him for what we have spent. He might not have made enough $$ to support himself, but probably enough when combined w/SSI (another thing I would have done immediately) and smaller contributions from us. There are lots of ideas that I can see in hindsight that would have made much more sense than thinking in terms of academic diploma and college-bound.

 

RIght now it is not a financial option. Maybe one day. In the meantime, we have to figure out what to do next (and going back to college is no longer a route we are willing to pursue.)

[rafiki]

.

[crazyfordlr]

Thank you for your candor re: academics. I've tried having this conversation with a few friends of mine ... or people I thought were my friends kwim. They were appalled at me even thinking about not pursuing college for my odd. Umm, you try parenting a SN child, and you tell me what becomes important, mkay? I guess it was so upsetting to me b/c these 2 friends are professional educators...

 

You're a great mom! You did the best you could then, and you're doing your best now. Cut yourself a whole lotta slack ;)

[MomatHWTK]

Thanks for the reminder that these issues are on the horizon. Time just rushes up on us!

[Ottakee]

That is great that you are getting good services now.

 

That is honestly one reason why I put my kids into school when I did. Starting at 14 and more so at 18 they can get job skills training and other help that homeschoolers often miss out on.

 

Right now we are starting the discussion of whether or not to have 15dd get a highschool diploma or just a certificate of completion. With just the certificate, she is able to get more services post highschool for training, help, etc.

 

She is our "borderline" kid. She has a borderline IQ (73), some LDs, mild CP, a Chiari I malformation, seizures, asthma, 2 mitochondrial disorders, etc. but she is above the clearly "special needs" level of our other 2 but I just don't see her holding down a job, etc. without some help/guidance and not a full time one with benefits, etc. Likely she will do a combination of SSI and a part time job.

[Pen]

Honest answer--everything. Yrs ago a therapist told us that all the education in the world wouldn't matter if ds couldn't hold a job. He made me so angry. Our ds was (is) intelligent. We were convinced that he could do whatever he wanted. (If Temple Grandin and all the other famous autistic/Asperger adults could do it, surely he could too!) Well, we were wrong.

 

Last yr we started becoming more realistic and thought that helping him learn a trade would be a better fit and we started pursuing that route. Unfortuantely, that is still not realistic.

 

If I could go back and do it all over again, I would take all the money we have spent on education (which is a huge number.......a yr in private high school, 2 yrs of CC (which is still expensive in our state), but even far more costly was the Aspergers college assistance program that we put him in this yr (meant to help them succeed in college---ds was significantly more prepared than all the other students academically. He can succeed in school. That is not what he needs for employability) um, back to the original thought :tongue_smilie: I would take that money and try to establish him in his own small business that would make him feel productive and generate a small income (but we would oversee his expenses, etc.)

 

Colleges provide accommodations for extra time, etc. Employers don't. If he can't produce the same output as typical employees, he won't keep a job. If he can't work as fast, as independently, as non-distracted as the next applicant in the pile, he won't keep a job.

 

Our sights are much, much lower these days. He needs a completely rote job. If he could maintain a job as grocery store stocker or bagger I would be thrilled.

 

So, if I went back even further, I would have stressed far less about academics and focused far more on developing an interest for a quasi-small business. (ds is an excellent artist. We could have established a small studio for him for what we have spent. He might not have made enough $$ to support himself, but probably enough when combined w/SSI (another thing I would have done immediately) and smaller contributions from us. There are lots of ideas that I can see in hindsight that would have made much more sense than thinking in terms of academic diploma and college-bound.

 

RIght now it is not a financial option. Maybe one day. In the meantime, we have to figure out what to do next (and going back to college is no longer a route we are willing to pursue.)

 

This was really helpful to know since while my son is different there are still many things that may overlap. Thank you for sharing it.

 

I think though, don't beat yourself up, because one never really knows what would have happened if some other route were taken. And if you had taken that one, and it didn't go well, you'd probably be thinking that in hindsight you should have sent him to college for all the money you spent on the studio.

 

A studio is a big investment, but maybe there are things you could do along those lines that would be more limited? For example, a family of neighbors are jointly making macrame bracelets, etc. and selling them at a Saturday Market. I would not have thought a lot of people would want to buy that sort of thing, but apparently enough do to make it worthwhile. And it did not take a whole studio or huge start-up outlay. OTOH, it takes a lot in terms of the business, and setting things up, and selling, and so on.

 

If the Good Will thing would help your son get job skills, then the idea of a job that is like a grocery store stocker might be possible, and it could be that it would be a place to start anyway. It might be helpful even toward doing some little business of his own.

[8filltheheart]

That is great that you are getting good services now.

 

That is honestly one reason why I put my kids into school when I did. Starting at 14 and more so at 18 they can get job skills training and other help that homeschoolers often miss out on.

 

I think that is a good approach for some kids. It would not have made a difference for our ds b/c he would not have qualified for services through the ps system. We were told that if he could function in a normal classroom then no services would be offered.

 

The rest of the young adults in the Aspergers program we had him in were from various public schools around our area. Those young people were academically ill-prepared and they and their parents are floundering just as much as we are. The main theme of conversations between the parents and the 2 autism groups involved in the program could be summed up simply as this the gap population......they walk out of high school into a void. The schools (from 3 different counties) did not provide any of these young people w/appropriate transition plans.

 

I am very glad that you are finding services for your young person. What a blessing!

 

This was really helpful to know since while my son is different there are still many things that may overlap. Thank you for sharing it.

 

I think though, don't beat yourself up, because one never really knows what would have happened if some other route were taken. And if you had taken that one, and it didn't go well, you'd probably be thinking that in hindsight you should have sent him to college for all the money you spent on the studio.

 

A studio is a big investment, but maybe there are things you could do along those lines that would be more limited? For example, a family of neighbors are jointly making macrame bracelets, etc. and selling them at a Saturday Market. I would not have thought a lot of people would want to buy that sort of thing, but apparently enough do to make it worthwhile. And it did not take a whole studio or huge start-up outlay. OTOH, it takes a lot in terms of the business, and setting things up, and selling, and so on.

 

If the Good Will thing would help your son get job skills, then the idea of a job that is like a grocery store stocker might be possible, and it could be that it would be a place to start anyway. It might be helpful even toward doing some little business of his own.

 

I'm really not beating myself up as much as venting frustration. I feel like life w/ds is like being permanently trapped on a carousel. We think we find a place that will help and then we ultimately end up back in the same place after months of this or that and huge amts of $$. This pattern has been going on since he was 14. Six yrs of round and round and round w/no real progress toward any feasible objective is incredibly disheartening.

 

Even holding a part-time job successfully would be a huge step in the right direction toward some adult-like behavior.

[Ottakee]

I think that is a good approach for some kids. It would not have made a difference for our ds b/c he would not have qualified for services through the ps system. We were told that if he could function in a normal classroom then no services would be offered.

 

.

 

That is one reason I am "thankful" for our medical diagnosis. It seems to help get more services in the school than some kids on the spectrum get.

[Kathryn]

Thank you so much for this! Although it's a long way off for us, it's something I worry about frequently for ODS. Your son sounds like what I expect mine to be like. Academics aren't really a problem here, as he's ahead in everything. But social/communication deficits are a different story.

[Dobela]

:grouphug::grouphug::grouphug: You are on the right track. Sometimes it just takes time to find that track though. My brother turned 40 this year and has HFA/Aspergers. My parents went thru much of what you have, including college and spending thousands on academics, only they didn't have an accurate diagnosis until he was in his 30s. For years he worked at my dad's business, until my dad decided to retire. The transition was rough and my parents in hindsight wished they had looked for more help sooner than later. My brother did take classes at a Rehabilitation center. It didn't help him find employment, but it has given him friends and some outside support that he did not have before. He has eventually started receiving SSI for his disability, but it was a long 2 year fight for him to receive it (that included many appeals and hiring an attorney). He has not been able to successfully hold a job, but with the SSI income and some extra support from my parents, he now volunteers in various places and LOVES it. If he gets too over whelmed, he can leave. The tasks are usually repetitive (filing, putting away inventory, making hot dogs, etc) and he loves that. The volunteer positions give him a chance to feel successful and like he is a contributing member of society. The positions usually involve little interaction with the general public and more interaction with understanding individuals in nonprofit organizations that seem to have more patience.

 

What you have done though is not a total loss. Expensive, yes, but not a total loss. My brother can talk about so many things to a wide variety of people because he went to college, had those special learning experiences, and so on. In a way they opened his social life a bit more.

 

The extra support from my parents includes an apartment on their property, money set up in a trust (his disability goes directly into a trust because he cannot handle money at all), transportation, and more like meals and clothing.

[8filltheheart]

:grouphug::grouphug::grouphug: You are on the right track. Sometimes it just takes time to find that track though. My brother turned 40 this year and has HFA/Aspergers. My parents went thru much of what you have, including college and spending thousands on academics, only they didn't have an accurate diagnosis until he was in his 30s. For years he worked at my dad's business, until my dad decided to retire. The transition was rough and my parents in hindsight wished they had looked for more help sooner than later. My brother did take classes at a Rehabilitation center. It didn't help him find employment, but it has given him friends and some outside support that he did not have before. He has eventually started receiving SSI for his disability, but it was a long 2 year fight for him to receive it (that included many appeals and hiring an attorney). He has not been able to successfully hold a job, but with the SSI income and some extra support from my parents, he now volunteers in various places and LOVES it. If he gets too over whelmed, he can leave. The tasks are usually repetitive (filing, putting away inventory, making hot dogs, etc) and he loves that. The volunteer positions give him a chance to feel successful and like he is a contributing member of society. The positions usually involve little interaction with the general public and more interaction with understanding individuals in nonprofit organizations that seem to have more patience.

 

What you have done though is not a total loss. Expensive, yes, but not a total loss. My brother can talk about so many things to a wide variety of people because he went to college, had those special learning experiences, and so on. In a way they opened his social life a bit more.

 

The extra support from my parents includes an apartment on their property, money set up in a trust (his disability goes directly into a trust because he cannot handle money at all), transportation, and more like meals and clothing.

 

Thank you for responding. I think you understand exactly what we are going through. It sounds like your brother is very similar to our ds.

[DawnM]

I need to start researching all of this.

 

We have known for years DS had Asperger's, but we finally have the official diagnosis. He also has some LDs, non identified but I am researching some more for specifics and I believe some of it is that he is a Visual-Spacial learner, but I will need to read more about it.

 

What I need to find is a trade-tech school that will work with him and where he can pursue his passion, which is Art- it could be graphic design or something with drawing. It is therapeutic for him, but I worry too about him being able to work under a deadline or even with other people. He has a very short fuse when he is frustrated.

 

I don't even know where to begin though.

 

I assume he will need to live with us for quite a while. I have even considered moving to a house with some sort of MIL apartment where he could live rent free should he need to.

 

Thank you for your post, you are inspiring me to get on the ball and start searching and seeing what resources are out there.

 

Dawn

[merry gardens]

:grouphug:

 

I'm in a situation somewhat similar to Dobela. My BIL was diagnosed with Aspergers as an adult.

 

8Fill--I love the idea of finding your ds some volunteer work and you have some great hindsight that you still might be able to try in the future. Just speaking as an extended family member, (and recognizing the challenge aging aspies can present for their siblings) is there something your ds can do to directly benefit your other children and family members? Since he's talented at art, perhaps he give art lessons or create something special& useful for the others? Family is a small unit of "society"; the proverbial "village" has historically been extended family units. If you want to help him find a way to contribute to society, maybe you can be on the look-out for ways he can contribute in a more adult manner within your family.