WORST case scenario - what happens then ?

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HisMom
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05 Oct 2012, 3:03 pm

One way I am trying to cope with my depression and fear is seeking knowledge of what would happen if my son grows up to be non-verbal and low functioning ?

What happens then ? Do low functioning autistic adults get disability ? What about health insurance ? Will they get SSI ? I am severely depressed and need words of advise and comfort.

I know that there is always hope but I can't shake this fear away. I am non-functional these days and cannot work. I am just paralyzed by depression and fear about what would happen to my son if he grows up to be completely dependent on others for the rest of his life. Who supports him financially ? What about a place to live once I am dead ? Will he end up on the streets ? I am not looking at my daughter to take care of him - it is not her problem and who knows if her husband (if she marries) would even permit her brother to move in with her ? Do group homes exist for autistic adults ?

Please help. I need to know how the worst afflicted people turn out financially and medically ? I think I would be a lot less depressed and hopeless if I found out that he would get SSI & disability and would not be homeless after I am dead and gone. Help ! !



Last edited by HisMom on 05 Oct 2012, 7:01 pm, edited 1 time in total.

Bombaloo
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05 Oct 2012, 6:47 pm

SSI and disability are exactly designed for people who cannot, for one reason or another, be gainfully employed. And there are lots of good group homes and programs to assist those who can't take care of themselves. It is very frightening to think about our kids being dependent as adults so don't beat yourself up for being worried. You must get help for yourself. You not functioning is not helpful. Find a good therapist or go see your doctor. Taking care of yourself is EXTREMELY important right now.



claudia
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06 Oct 2012, 4:08 am

it seems you are describing my feelings 3 months ago.
My son's neuropsichiatrist told me he will never read or write. I want you to know that I'm peaceful again, so you will overcome your bad feelings.
There are many battles to be fought before your son will be grown up. Think about that battles and fight for him.



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06 Oct 2012, 5:23 am

HisMom wrote:
One way I am trying to cope with my depression and fear is seeking knowledge of what would happen if my son grows up to be non-verbal and low functioning ?

What happens then ? Do low functioning autistic adults get disability ? What about health insurance ? Will they get SSI ? I am severely depressed and need words of advise and comfort.

I know that there is always hope but I can't shake this fear away. I am non-functional these days and cannot work. I am just paralyzed by depression and fear about what would happen to my son if he grows up to be completely dependent on others for the rest of his life. Who supports him financially ? What about a place to live once I am dead ? Will he end up on the streets ? I am not looking at my daughter to take care of him - it is not her problem and who knows if her husband (if she marries) would even permit her brother to move in with her ? Do group homes exist for autistic adults ?

Please help. I need to know how the worst afflicted people turn out financially and medically ? I think I would be a lot less depressed and hopeless if I found out that he would get SSI & disability and would not be homeless after I am dead and gone. Help ! !

I agree with what Claudia said.
Basically when you find out your kid has Autism you think about this stuff a lot and read a lot of stuff on the Internet and get really depressed. It found it lasted about two years. Then you start to accept it, and then its OK. At least thats how its been for me, essentially you go through the grief cycle.
Early on after DX I kept going to work, but I sat at my computer for months in a fog going through the motions. I would read some sad poem about Autism and have tears running down my face, and have to pretend I had problems with my eyes.
The only person I talked to about my son having Autism was my boss, he just said "Damn - kids huh?" and that was that.
I didn't bother after that.

You'll feel a lot better one day. Your son is still a person, and needs you more than ever. And I bet there are many positive aspects about your son that you could tell us about.

I personally will be looking to my daughter not to look after my son, but to look out for my sons best interests when I'm gone. My mother has said to me that she thinks it is unfair to burden her grand-daughter with that, I say to her "it is what I expect of her, he is her brother, and it is the way it is". She is a good girl and I know she will be there for him. There is a reason for family.
In terms of finances, I am going to leave as much as I can behind so that hopefully he will have a good life with my daughter to look out for him. Also in our country he will get a disability allowance.

On top of that, and on a more positive note I truly believe that in the future the mechanism behind what happens to our kids will be known, and there will be treatments for it. I'm very optimistic when I see early drugs like STX209 seeming to have a definite effect for some people, and how science is starting to narrow in on certain areas of research. Means they are getting closer.



HisMom
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06 Oct 2012, 8:54 am

claudia wrote:
it seems you are describing my feelings 3 months ago.
My son's neuropsichiatrist told me he will never read or write. I want you to know that I'm peaceful again, so you will overcome your bad feelings.
There are many battles to be fought before your son will be grown up. Think about that battles and fight for him.


Hi Claudia,

I have known that my son has difficulties for a while now, but they have intensified since his 3rd birthday came and went and he spoke nothing.

The school is so negative, telling me he has mental retardation and such, and I almost began to believe them. Then, I realized that they were doing this due to an ulterior motive, and it began to anger me.

The bottom line is this - my son does not learn well in a structured setting or at a desk. I have just realized that his learning profile is hands - on, and happens best in a sensory - rich environment. He is great at physical activities - running, jumping, climbing, swimming, riding - and a completely different personality emerges when he is indulging in gross motor activities. Sit him down at a desk and he withdraws into a shell, gets confused, and completely shuts down. When he goes to speech therapy, and the therapist sits him down at a desk, and gets him to interact with her, he tries to escape, screaming loudly, and begins to spin wildly on any object he can get his little hands on.

But, when I take him to OT, he is happily running around the gym, and will even do puzzles or art activities for about a few minutes - after an hour of gym, of course. His OT says that he needs lots and lots and lots and lots and lots of vestibular input to do anything on command.

This scare me. Traditional schooling is a desk job. He is obviously a misfit in the traditional environment. It is OK now, since he is only 3. What when he turns 6 ? 10 ? 15 ? I am afraid that they would label him ADHD and insist on medicating him. The fears intensify and the nightmares begin.

It freaks me out that he may never get an education this way, especially if he is a physical person and is only able to sit at a desk for a few minutes at a time.

His receptive language is another huge area of concern. I honestly believed that it was getting better. In the past week, he has regressed again, and continues to have difficulties complying. I am scared to death now.

What next for my son ? What will happen to him on a long term basis ?



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06 Oct 2012, 9:04 am

Nobody is going to be able to answer that. My son is largely a kinesthetic learner, too, in addition to being very visual as opposed to auditory. Yes, it is a challenge but there are accommodations that can be made. My son is has a proprioceptive device on his chair, (an inflatable cushion with sensory nubs) but he is also allowed to stand. He is allowed to move around near his seat etc.

It is not as problematic as it seems necessarily if you can get them to understand your child's issues.



HisMom
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06 Oct 2012, 9:14 am

ASDMommyASDKid wrote:
Nobody is going to be able to answer that. My son is largely a kinesthetic learner, too, in addition to being very visual as opposed to auditory. Yes, it is a challenge but there are accommodations that can be made. My son is has a proprioceptive device on his chair, (an inflatable cushion with sensory nubs) but he is also allowed to stand. He is allowed to move around near his seat etc.

It is not as problematic as it seems necessarily if you can get them to understand your child's issues.


I have tried to tell them this for MONTHS now - that he is very hands on and to teach him through games and fun activities. They looked at me like I was smoking something. In fact, at our last contentious IEP, I told them that I would like to share the things that worked for us at home, with regard to progress in some of his IEP goals. The Principal responded, stating that the home or therapeutic environment is very different from the educational environment. These female dogs essentially want to label my son and either medicate him, or, if I refused to medicate him, then to somehow get him off their hands.

For instance, we have been trying to teach him to get his shoes off for about 7 weeks now and he has always struggled. Yesterday, at OT, his therapist put him through an obstacle course for about 20 minutes, then sat him down in her lap, and just said, "Shoes off". Next thing I know, he effortlessly pulled both shoes off. This is why she says he need tons of vestibular input. Question is, which school would provide this for him to facilitate his learning ?

I want to homeschool him but I also worry about his long term prognosis. How do I teach him abstract subjects like History or Geography or Literature ? MAYBE this is why he is struggling with language and the highly symbolic tapestry that makes up language. I am my wits' end.



HisMom
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06 Oct 2012, 9:19 am

Nostromo,

I just found out that he won't get disability here since his parents aren't collecting disability or getting social security checks. So, we either have to die or go on welfare ourselves in order for him to eventually get disability or supplemental income.

My husband says the same thing that you do - work hard and leave a large estate so our son will always have a roof over his head and food on his table, as long as his sister is around to look out for him and manage his money for him properly.



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06 Oct 2012, 9:43 am

HisMom wrote:
Nostromo,

I just found out that he won't get disability here since his parents aren't collecting disability or getting social security checks. So, we either have to die or go on welfare ourselves in order for him to eventually get disability or supplemental income.

My husband says the same thing that you do - work hard and leave a large estate so our son will always have a roof over his head and food on his table, as long as his sister is around to look out for him and manage his money for him properly.

You are looking soooooo far down the road right now that I think your perspective is getting skewed. Try to focus on what is in front of you. There are schools that make the kinds of accommodations you are talking about. You know what you can do RIGHT NOW? You can find another placement for him. There are other options. When I get wound up with worry and frustrated about the current situation, that's what I try to think about, what can I do right now? You cannot do anything to change what may or may not happen to him 20 years from now at this moment but you can find a way to connect with him right now which is far more helpful than going into a tailspin about whether or not he will be eligible for SSI in 20 years.



HisMom
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06 Oct 2012, 9:52 am

Bombaloo wrote:

You are looking soooooo far down the road right now that I think your perspective is getting skewed. Try to focus on what is in front of you. There are schools that make the kinds of accommodations you are talking about. You know what you can do RIGHT NOW? You can find another placement for him. There are other options. When I get wound up with worry and frustrated about the current situation, that's what I try to think about, what can I do right now? You cannot do anything to change what may or may not happen to him 20 years from now at this moment but you can find a way to connect with him right now which is far more helpful than going into a tailspin about whether or not he will be eligible for SSI in 20 years.


I am looking at the absolutely worst case scenario - which is what the school has me believing.

I am in disagreement with the IEP and have two options for now - keep him home, given him lots of hands-on activities here, get ABA through insurance, then worry about homeschool or public school at age 6.

OR

Keep fighting these female dogs for an alternative placement, which they are unwilling to consider. Since we "own" an underwater home (in the red by 300K), we cannot move without trashing our credit. Frankly, I don't mind trashing our credit IF we knew that he would get a better option at his school district. Which is why I am worried about his current IEP traveling with him, essentially biasing his new district against him

I feel trapped and hopeless



Bombaloo
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06 Oct 2012, 10:07 am

Since he's just 3, what would be wrong with keeping him home and receiving ABA at home? If you don't have to fight the battle with the public, school system, don't. You can go back after a year and they will have to re evaluate him.



claudia
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06 Oct 2012, 2:25 pm

HisMom wrote:
The bottom line is this - my son does not learn well in a structured setting or at a desk. I have just realized that his learning profile is hands - on, and happens best in a sensory - rich environment. He is great at physical activities - running, jumping, climbing, swimming, riding - and a completely different personality emerges when he is indulging in gross motor activities. Sit him down at a desk and he withdraws into a shell, gets confused, and completely shuts down. When he goes to speech therapy, and the therapist sits him down at a desk, and gets him to interact with her, he tries to escape, screaming loudly, and begins to spin wildly on any object he can get his little hands on.


I think they are teaching him in the wrong way. A 3yo child doesn't sit at a desk. New capabilities have to be taught in a play oriented way. If he likes physical activities, he can be taught using them. If school is doing this, I agree with Bombaloo



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07 Oct 2012, 1:47 pm

I work at an autism non-profit for educating autistic children. Ackshul education, the three R's, reading, writing (in the form of typing), arithmetic, moar moar moar. The best way to avoid having your son become a non-verbal dependent adult is to educate him as much as possible, lots lots lots. By educating him, I don't mean teaching him to imitate neurotypical behaviors. I mean teaching him academic subjects and language skills to develop his brain and become a thinker. I have spoken to quite a few parents whose kids are teenagers. The kids went through the great big autism system of today and did not turn out as they could have. They had a path of autistic development that was derailed by the standard therapies and lack of education. When they started school, they were non-verbal or limited in speech and language abilities. They were taught no academic subjects, because it was assumed that they could not learn. They were not considered classroom-ready because they moved around too much or even not that much but in an autistic way of rocking that was considered wrong and bad. They did not learn, because they were not taught in ways that they could learn. They got the label "mentally retarded". Once you get that label, it's all over. Teachers see that and automatically assume that your child is incapable. There is no point in teaching your child, they think. Go to the special ed classroom to do nothing all day, stat. School is the babysitter, not the educator. If they give that label to your son, ignore it, reject it. Don't listen to the professionals. They have no farking clue what they are doing. One speech and language pathologist, the best in my city, admitted to me that all of them were just throwing stuff at the wall to see what would stick. That is not the way to help an autistic child. While the pitching practice is going on, the clock is ticking. Take matters into your own hands for your child. Does your son know how to read? If not, teach him. I work with parents who have been there and done that. Their kids are older that yours, and they are sick of the system that tosses autistic kids into the trash in the guise of helping them. Helping them do what? Here is what happens. The kids show some limited imitation of neurotypical behaviors after they start the therapies. They are less socially aloof and look and point moar or whatever. That gives the parents hope, but what is coming later is the plateau. That happens around age eight or nine. Speech is stuck at echolalia. Reading comprehension is nil. Why? Not because the child is autistic and cannot learn language. Language can be learned, if eggsplicitly taught. I learned at age eight. I had functional speech at age nine. Language skills are stuck at a low level, because the kid is not taught how they need to learn. Autistic kids learn differently. By the time that some kids are teenagers, private schools won't even accept them anymoar, because they are considered difficult cases. That's the end of the line. Institutionalization is sometimes recommended. The best way to avoid that is to begin the education process now now now.

I wrote a blog post about learning to read: [url=autisticandawesome.wordpress.com/2012/08/30/level-up-learn-to-read/]Learn To Read[/url]



claudia
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07 Oct 2012, 2:05 pm

btbnnyr wrote:
I work at an autism non-profit for educating autistic children. Ackshul education, the three R's, reading, writing (in the form of typing), arithmetic, moar moar moar. The best way to avoid having your son become a non-verbal dependent adult is to educate him as much as possible, lots lots lots. By educating him, I don't mean teaching him to imitate neurotypical behaviors. I mean teaching him academic subjects and language skills to develop his brain and become a thinker. I have spoken to quite a few parents whose kids are teenagers. The kids went through the great big autism system of today and did not turn out as they could have. They had a path of autistic development that was derailed by the standard therapies and lack of education. When they started school, they were non-verbal or limited in speech and language abilities. They were taught no academic subjects, because it was assumed that they could not learn. They were not considered classroom-ready because they moved around too much or even not that much but in an autistic way of rocking that was considered wrong and bad. They did not learn, because they were not taught in ways that they could learn. They got the label "mentally retarded". Once you get that label, it's all over. Teachers see that and automatically assume that your child is incapable. There is no point in teaching your child, they think. Go to the special ed classroom to do nothing all day, stat. School is the babysitter, not the educator. If they give that label to your son, ignore it, reject it. Don't listen to the professionals. They have no farking clue what they are doing. One speech and language pathologist, the best in my city, admitted to me that all of them were just throwing stuff at the wall to see what would stick. That is not the way to help an autistic child. While the pitching practice is going on, the clock is ticking. Take matters into your own hands for your child. Does your son know how to read? If not, teach him. I work with parents who have been there and done that. Their kids are older that yours, and they are sick of the system that tosses autistic kids into the trash in the guise of helping them. Helping them do what? Here is what happens. The kids show some limited imitation of neurotypical behaviors after they start the therapies. They are less socially aloof and look and point moar or whatever. That gives the parents hope, but what is coming later is the plateau. That happens around age eight or nine. Speech is stuck at echolalia. Reading comprehension is nil. Why? Not because the child is autistic and cannot learn language. Language can be learned, if eggsplicitly taught. I learned at age eight. I had functional speech at age nine. Language skills are stuck at a low level, because the kid is not taught how they need to learn. Autistic kids learn differently. By the time that some kids are teenagers, private schools won't even accept them anymoar, because they are considered difficult cases. That's the end of the line. Institutionalization is sometimes recommended. The best way to avoid that is to begin the education process now now now.

I wrote a blog post about learning to read: [url=autisticandawesome.wordpress.com/2012/08/30/level-up-learn-to-read/]Learn To Read[/url]

Oh thak you that's very interesting.



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07 Oct 2012, 2:39 pm

btbnnyr wrote:
I work at an autism non-profit for educating autistic children. Ackshul education, the three R's, reading, writing (in the form of typing), arithmetic, moar moar moar. The best way to avoid having your son become a non-verbal dependent adult is to educate him as much as possible, lots lots lots. By educating him, I don't mean teaching him to imitate neurotypical behaviors. I mean teaching him academic subjects and language skills to develop his brain and become a thinker. I have spoken to quite a few parents whose kids are teenagers. The kids went through the great big autism system of today and did not turn out as they could have. They had a path of autistic development that was derailed by the standard therapies and lack of education. When they started school, they were non-verbal or limited in speech and language abilities. They were taught no academic subjects, because it was assumed that they could not learn. They were not considered classroom-ready because they moved around too much or even not that much but in an autistic way of rocking that was considered wrong and bad. They did not learn, because they were not taught in ways that they could learn. They got the label "mentally retarded". Once you get that label, it's all over. Teachers see that and automatically assume that your child is incapable. There is no point in teaching your child, they think. Go to the special ed classroom to do nothing all day, stat. School is the babysitter, not the educator. If they give that label to your son, ignore it, reject it. Don't listen to the professionals. They have no farking clue what they are doing. One speech and language pathologist, the best in my city, admitted to me that all of them were just throwing stuff at the wall to see what would stick. That is not the way to help an autistic child. While the pitching practice is going on, the clock is ticking. Take matters into your own hands for your child. Does your son know how to read? If not, teach him. I work with parents who have been there and done that. Their kids are older that yours, and they are sick of the system that tosses autistic kids into the trash in the guise of helping them. Helping them do what? Here is what happens. The kids show some limited imitation of neurotypical behaviors after they start the therapies. They are less socially aloof and look and point moar or whatever. That gives the parents hope, but what is coming later is the plateau. That happens around age eight or nine. Speech is stuck at echolalia. Reading comprehension is nil. Why? Not because the child is autistic and cannot learn language. Language can be learned, if eggsplicitly taught. I learned at age eight. I had functional speech at age nine. Language skills are stuck at a low level, because the kid is not taught how they need to learn. Autistic kids learn differently. By the time that some kids are teenagers, private schools won't even accept them anymoar, because they are considered difficult cases. That's the end of the line. Institutionalization is sometimes recommended. The best way to avoid that is to begin the education process now now now.

I wrote a blog post about learning to read: [url=autisticandawesome.wordpress.com/2012/08/30/level-up-learn-to-read/]Learn To Read[/url]



I was in special education till highschool this is true. all they did was give me a packet of busy work. it did not make a difference if I did it or not. I ended up spending tons of time reading encyclopedias teaching myself.