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When your special needs child doesn't grow up when they're a grown up...

post #1 of 15
Thread Starter 

My 18 year old son has Asperger's.  We have multiple agencies helping us (him, now that he's 18), and I've tried applying for Disability for him as well, but everything seems to be falling through because of lack of effort on HIS part.  Yet, each agency tells me that if HE doesn't apply/fill out paperwork/make it to appointments, etc, they can't help.  My son pretty much stays in his room all day long on the computer.  Forcing him out of his room for anything- job search, meals, chores, bathing, etc- is a long and sometimes verbally violent process (think 3 year old tantrum without the hitting).  I can't support him financially and I can't keep holding his hand through every single thing- I have four other children to take care of, I'm job searching, and I'm just plain tired.  I can see him in literally the same exact place, in the same exact position, 5-10 years from now.  What can I do?

post #2 of 15
Hi,

I didn't want to be another poster who reads but doesn't reply. But I don't know. I teach young children so I don't have any experience helping families with older teens. Hopefully others can give you suggestions. What state are you in?
post #3 of 15
Thread Starter 

I'm in MA.  My son actually just lost his insurance (Medicaid) because now that he's 18, everything's getting mailed to him now and he wasn't even opening his mail, just throwing it in a pile in his room, and now the places who are supposed to be helping us won't/can't help us anymore until we get his insurance cleared up.  I feel like my son is falling through the cracks and my only option is to support him indefinitely (which Section 8 and Food Stamps won't let me do without penalizing me, since he's now an adult).

post #4 of 15

It seems like you need to be opening his mail and keeping on top of these appointments for him. He might be 18, but it doesn't sound like he has the capacity or maturity to be handling these things for himself yet, so perhaps you will just have to keep assisting for a while longer. I admit I don't know what sort of programs are available for young adults on the spectrum, but I would assume there are organizations that are out there to teach kids how to function in society. If not there should be, given the huge number of kids with autism that will be aging out of the system over the next few year.

post #5 of 15

I'm so sorry you're facing this, the system is really screwed up and I have no idea what you can do. It's just not fair to demand people with disabilities that prevent them from caring for themselves have to be the ones to meet these requirements. As his caregiver you should be able to fill out these forms and get him what he needs instead of having to fight with him. I'm not saying there is a way to do it, just that there should be. What do they do about people who are so severely disabled that they really can't do any of these things?

 

So many other people are facing similar things, and I don't know if that helps or not- but you definitely are not alone in facing this. We really need a complete overhaul because the system just is not working.

post #6 of 15

Can you get your son to sign a "power of attorney" document for you?  This will allow you to do what you need to do on his behalf, like when he was a minor.  It is a really simple legal document that an attorney can draw up for you.

 

I don't have any experience for your specific situation, but this kind of thing comes up all of the time when adult children take care of their aging parents and the parents lose the ability to take care of things themselves.

post #7 of 15

What is his school situation? Special needs kids qualify for public education until they are 21, and that those last years focus on life and job skills.

post #8 of 15
Thread Starter 
Quote:
Originally Posted by emilysmama View Post
 

Can you get your son to sign a "power of attorney" document for you?  This will allow you to do what you need to do on his behalf, like when he was a minor.  It is a really simple legal document that an attorney can draw up for you.

 

I would like to, but I can't afford an attorney.

 

Quote:
Originally Posted by Linda on the move View Post
 

What is his school situation? Special needs kids qualify for public education until they are 21, and that those last years focus on life and job skills.

 

He got his GED last March, turned 18 last June.  He also suffers from Depression and because he's now 18, I'm told I can't force him to take medication for the Depression.

post #9 of 15
You can create one for free. Just Google

free power of attorney form

And you will find lots.
post #10 of 15

Regarding power of attorney.

Try asking Legal Aid about this: http://www.nolo.com/

post #11 of 15

I have some experience in this arena, but sadly, little concrete advice. :HugHugs, but no good answers.

 

First, I would look into your state Department of Developmental Disabilities (may be called something different in your state). In my state, there are specific services available to young adults in your child's position. The programs have names like "Transition Age Youth", and some are through county mental health services, some through community college, as well as state DDD. You may find classes on "Independent Living", skills trainers, or a variety of other supports. Even supported housing and some group living situations may be worth considering.

 

Next, look into legal guardianship. This goes far beyond Power of Attorney, and will basically recreate the situation of a parent/child relationship. Must be court-ordered. I don't know if this would meet your needs, if your son would agree to it, if a court would order it against his will, or if it will help you at all. But please learn about this. If you have guardianship, there would be no issues with your own benefits, Section 8, etc. Promise!

 

Does he receive SSI (through Social Security)? If he is eligible for that, he automatically qualifies for insurance, at least in my state. Please apply. Or re-apply.

 

I hear in your post how exhausted you are. What support do you have for yourself?

post #12 of 15

Don't be afraid to show some tough love, that's my best advice. Growing up with aspergers, I definitely felt resentment towards my parents for showing tough love and encouraging me to work, be responsible, make something of my life. Even things like doing simple chores around the house would stress me out.

 

Looking back now at 25 years of age, I can honestly say that my parents knew what was best for me, and I am eternally grateful for everything they did. If you keep on pushing your son to get him to be responsible, one day he will thank you for it. Keep that in mind.

post #13 of 15
Quote:
Originally Posted by Concerned25 View Post
 

Don't be afraid to show some tough love, that's my best advice. Growing up with aspergers, I definitely felt resentment towards my parents for showing tough love and encouraging me to work, be responsible, make something of my life. Even things like doing simple chores around the house would stress me out.

 

Looking back now at 25 years of age, I can honestly say that my parents knew what was best for me, and I am eternally grateful for everything they did. If you keep on pushing your son to get him to be responsible, one day he will thank you for it. Keep that in mind.

:yeah  I was going to say something like that too, but I'm afraid to sound disrespectful.  But, ugh, I must open my mouth here:  Aspergers isn't THAT much of a disability, maybe you've babied him too much and he needs a kick in the pants.  All the Aspies I know are independent, hold down a regular job, some have started their own businesses and remain successful, completed college degrees, are raising families, etc. 

 

On the softer side, Aspies love order.  You should ask him to come up with his own routine for dealing with his mail.  A desk organizer?  Those file holders you hang on the wall?  A daily checklist? 

post #14 of 15
Thread Starter 
I've managed to get "power of attorney" for his medical, but I'm still working on an all around "power of attorney".

 

Quote:
Originally Posted by mamarhu View Post
 

I have some experience in this arena, but sadly, little concrete advice. :HugHugs, but no good answers.

 

First, I would look into your state Department of Developmental Disabilities (may be called something different in your state). In my state, there are specific services available to young adults in your child's position. The programs have names like "Transition Age Youth", and some are through county mental health services, some through community college, as well as state DDD. You may find classes on "Independent Living", skills trainers, or a variety of other supports. Even supported housing and some group living situations may be worth considering.

 

Next, look into legal guardianship. This goes far beyond Power of Attorney, and will basically recreate the situation of a parent/child relationship. Must be court-ordered. I don't know if this would meet your needs, if your son would agree to it, if a court would order it against his will, or if it will help you at all. But please learn about this. If you have guardianship, there would be no issues with your own benefits, Section 8, etc. Promise!

 

Does he receive SSI (through Social Security)? If he is eligible for that, he automatically qualifies for insurance, at least in my state. Please apply. Or re-apply.

 

I hear in your post how exhausted you are. What support do you have for yourself?

 

We're working on SSI.  We've been applying for almost a year now, but getting the run-around- they can't seem to figure out is Asperger's is a legitimate disability or not, since it's not full blown Autism, :eyesroll, and completely discounting his Depression.  I'd just gotten the local Mental Health/People With Disabilites program to help us with the SSI, but they work through health insurance, so now we have to pretty much start all over with them now that my son has his insurance back.  I will also look into Legal Guardianship.  I'm trying to get him to see a therapist again, but he's refusing because he doesn't like to talk about his problems with anybody- he sees no point in it.

 
Quote:
Originally Posted by EarthRootsStarSoul View Post
 

:yeah  I was going to say something like that too, but I'm afraid to sound disrespectful.  But, ugh, I must open my mouth here:  Aspergers isn't THAT much of a disability, maybe you've babied him too much and he needs a kick in the pants.  All the Aspies I know are independent, hold down a regular job, some have started their own businesses and remain successful, completed college degrees, are raising families, etc. 

 

On the softer side, Aspies love order.  You should ask him to come up with his own routine for dealing with his mail.  A desk organizer?  Those file holders you hang on the wall?  A daily checklist? 

 

He loves order to the point of OCD.  I haven't babied him, however, when he was 14, he became severely depressed due to a family situation and he seems to have completely stopped emotionally maturing since then.  I honestly don't know if it's Asperger's, Depression, or some combo, but basically, life isn't working for him.  He's told me himself, he just doesn't want to coexist with anybody in the world, he just wants to live his life by himself, he doesn't understand why he has to live by society's rules if he doesn't want to be part of society, he just wants to be left alone to do his thing.  He's lost social skills he had when he was younger- does not talk to people that are not close family members, will not/cannot look most people in the eyes anymore, no longer grasps basic concepts (or chooses not to?) such as responding when somebody wants to talk small talk, etc.  I hold him responsible for acting like an adult, but that causes to fight all the time lately.

post #15 of 15
Quote:
Originally Posted by kblackstone444 View Post

 

He loves order to the point of OCD.  I haven't babied him, however, when he was 14, he became severely depressed due to a family situation and he seems to have completely stopped emotionally maturing since then.  I honestly don't know if it's Asperger's, Depression, or some combo, but basically, life isn't working for him.  He's told me himself, he just doesn't want to coexist with anybody in the world, he just wants to live his life by himself, he doesn't understand why he has to live by society's rules if he doesn't want to be part of society, he just wants to be left alone to do his thing.  He's lost social skills he had when he was younger- does not talk to people that are not close family members, will not/cannot look most people in the eyes anymore, no longer grasps basic concepts (or chooses not to?) such as responding when somebody wants to talk small talk, etc.  I hold him responsible for acting like an adult, but that causes to fight all the time lately.

That's so hard.  I wish there was a good clear way to describe the levels of ability in the autism spectrum.  We all know it's not just one thing.  But if he really can't take care of himself, then he needs to be formally moved to another level of autism.  If he can be declared medically disabled it will be easier for you to get legal power of attorney.  People do regress, or stop developing sometimes before adulthood.  I know a few adults on the spectrum that seemed to stop maturing at age 10 or 12 or 14.  They look like adults, and superficially seem like adults, but mentally, they are preteens, or teens. 

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